Learning to Listen

I am not talking about Elijah and his "ears" today. The person who has had to learn to listen in the last few months has been me. One thing I have had to learn about myself is that sometimes I am so busy trying to say what I need to say that I don't listen well enough. Sometimes LESS is MORE when you are trying to get your point across. This is somethings I have known for a long time and something I have really had to work on in the last few months. I have OCD myself and I don't know if it is that or just my personality, but sometimes I just NEED to shut my mouth and listen.

I also think I have become more aware of it now that I am the director of the deaf ed. program that I work in. I am the boss now, and I have to set the example of how to listen and how to jump in and help out. Sometimes even if you are right about something, you can lose the battle because of how you present your case.

I think this is something about myself that I will always need to be aware of and continue to work on. It has gotten easier to tell myself to "be quiet", but there are times when I think my OCD kicks in and I just can't shut up no matter how hard I try. Those are the times I really have got to see myself and just shut up. I guess I am on the right track....acknowledging the problem is the first step, right?

Parenting Decisions

Having a child means having to make decisions. Some decisions are easier than others. The first big decision is picking out a name for that new baby, or it may be even deciding TO get pregnant! Jacob was an easy child. There weren't a lot of "hard" decisions to be made with him. I decided to breast feed, we picked out a sitter, what kind of formula and so on. As Jacob has gotten older there have been harder decisions. One of the hardest things I did was let him go on an overnight trip at school. He did great, of course, but I was a basket case. He was in 5th grade and a mature kid, but OH it was hard. There will be more decisions ahead...letting him take the car for his first solo drive after getting his license, trusting him to make good choices when he is off with his friends, and later allowing him to leave home to go to college or just live on his own and work. Of course, he may choose to stay here a while! Ha!

There were a lot more decisions to be made for Elijah: To implant him or not when we found out he was deaf. Choosing doctors for all of his issues. Choosing a school when he was THREE and then letting him ride a bus to and from school at this time too. Choosing to put him in a behavior classroom due to his behavior with tourettes, OCD and ADHD. Again, there are more and more decisions that will have to be made as Elijah gets older. I think the hardest thing will be "growing him up" meaning letting go of my baby and expecting more from him. I have done that to a certain extent, but it will only get harder as he gets older.

I guess I now know why my mom worried so much about me, but she let me make my decisions as I grew up and learn from my mistakes. I hope I can do the same for my own kids.

Our cats

I haven't written about our kitties in a while, so I thought I would do that tonight. I need a distraction from tics!

Tiger, our black tabby, is doing well. He got sick about six weeks ago, but after a trip to the vet and some antibiotics he is doing well. He did hurt his foot the week before spring break and we had to go back to the vet. He had scraped up his paw pads pretty bad. He got to go with us on a trip to my mom's house. Thankfully he is a pretty laid back cat and did well on the drive there. He even ventured out and walked around her house and explored. I slept with him every night in one of her spare rooms and boy did he lay the love on me. I think he was afraid I would leave him there!

Perky is our white cat with some black fur, but more white than black. She was sick before Tiger got sick. Oh my vet bill is higher than I would like it to be. She is my only female companion in this house. She is laying next to me as I type and enjoying it when I pet her. She doesn't like to be held much, and we enjoy annoying her and making her "yodel". If you don't know what this is, go to youtube and search for cat yodeling. She has the best hearing. If I even raise the blinds in Elijah's room she is the first cat in the room to look out the window.

Oreo is our tuxedo cat who is black with some white. His name is Oreo because he is black with a white middle! We got him back in December and he is our baby kitten. It took a while for Perky and Tiger to accept him, but they are a wild bunch now. Oreo loves to have his stomack rubbed and he will let us hold him for a long time. He gets a little freaked when new people come over, but he was abandoned as a kitten and found under a house. I don't blame him for being skittish. He was uneasy with us for a whlie, but now les us scoop him up and carrying him around.

Jacob is our "cat whisperer". He loves to pick up one of the cats and just roll with him or her. They usually all sleep with him at night. Elijah loves the cats also, and he is very sweet with them. It helps with his behavior to have the cats.

We do love our kitties. Perky is still next to me, Oreo is asleep in a bing bag chair and Tiger just came in to see us! Now if they would only clean the house during the day when I am at work! Ha!

Looking Back

I was talking to a mom today of a child with a hearing loss. We were discussing cohclear implants and the choices that lay ahead for this family. After getting off the phone I started thinking of how far Elijah has come.

When I brought him home from the hospital he weighted five pounds nine ounces and needed oxygen. He was born eight weeks premature and was very sick for several weeks. He is now 4 ft. 2 inches tall and weighes 75 pounds. His lungs were weak for a long time, but he is very healthy now. He still sees a pulmanologist though and takes meds for his asthma. He failed his newborn hearing screening five weeks after his birth when he was being discharged from the hospital. He didn't even start talking until he was almost three years old, but did have signs prior to that. He was four before he was talking well. He now talks all the time and I wish I could have some peace and quiet. The day I brought him home, I was so overwhelmed by this small baby and now it seems like time has passed so quickly. We have new challenges with his tourette syndrome, OCD, ADHD and anxiety but I believe we are on a good path right now.

Jacob has changed so much in the last year too. He is now taller than me standing 5 foot 6 inches tall. He has this thick red hair that is just gorgeous and has the teen attitude too. He was sometimes the forgotten child, because his younger brother took up so much of my time. I think he has turned out OK though. I wish I could rewind time though and change a few things with him, but I'll just have to do my best right now with him.

I just remind myself that life is a journey and you never know where it may take you!

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!

Will we survive the Teen years?

We are at my mom's for the weekend in Marhsall, TX. So far it has been a good visit. However we could not get Jacob's wireless working on his laptop, so we had to plug him in! ha! There was some drama involved with trying to fix it, but we finally just had to give up. This picture is what he looks like most days! Don't you love that face!

I called Dell this morning and spent 90 min with a very patient tech person, who checked things out remotely on my computer. It is amazing to me that they can connect to my computer from somewhere else and control the mouse. I am so glad they can, because it is just to technical for me. I spent 90 min. on the phone and it was determined that something is corrupted on the hard drive so they are sending a new hard drive with all of his original programs installed. I was proud of him. He took it well. Asked if we could get him a thumb drive so he could save his stuff onto it and not lose it. He was very mature and helped me with some things and was not upset that we would have to wait for a hard drive. He can still use the computer, but not wirelessly. I will have to reinstall Windows 7, that will be half a day with tech support but they do help a lot.

We go off to Walmart. Elijah picks out some legos and Jacob finds a game he wants to buy with his money. I front him $7 to get it and his grandmother buys him a thumb drive. After all purchases are made, his mood gets SOUR. He just wants to GO back to grandmas and get busy on his computer. We are hungry and want to get something to eat, so we stop at Chilis. OH my, he decides NOT to order anything and to sit there and pout. Oh my can he pout. After about 15 min of us ignoring him, he finally starts talking to us. I am going to have to have a long talk with him about how he behaves. I hope we can survive these teen years. I never knew boys could be so dramatic. I also think he has some OCD because once he gets in his head what he wants to do, he doesn't like changing HIS plans of what he though would happen.

Why?

Why is it when we travel, Elijah tends to just GIVE me harder time than usual? We decided to come to my mom's this weekend since we are all off for spring break. We are just staying for two nights. The boys were pretty good on the drive down. Typical bickering but nothing too bad. Got here and got the cat settled. we don't usually bring one of the cats, but Tiger has a wound that needes tending so we could not leave him at home. By the way, he is the sweetest kitty in the world and did great on the drive.

My mom was on the phone with her sister, who is staying with my grandmother who is not doing well. I get Elijah out of his bath and hand him his clothes. I go to get his implants and then Elijah starts yelling at the top of his lungs he needs help. He can't hear himself and has no idea my mom is on the phone. I go in and motion for him to be quiet(with a finger to my lips) and HE GOT LOUDER. I try to put his processors on and he won't let me so he can listen. I draped them(they are on eargear) around his neck and he YELLS at me ....YOU DO IT. He also starts yelling for grandma who is still on the phone. I just walked away at that point and left him in the room. He finally put his "ears" on and told him he could come out when he stopped crying. He did calm down and now things are fine. He just always has to test me when we are out of our normal routine.

Glasses OFF!

Elijah has gotten into the wrestling mood the last few nights. It is something fun we can do! When we wrestle he tells me "Glasses OFF". This is something he learned from his big brother. Whenever Jacob wanted to wrestle, when he was just a small thing, he would walk up to his dad or me and say "Glasses off" and we knew it was time to wrestle. I can't believe how much time has passed since I last wrestled Jacob. He is JUST too big and has been too big for a long time. I am glad that Elijah is still young enough that he wants to wrestle....however he is getting almost TOO big for me to wrestle! I need to enjoy it while I can!

Update on us!

We are counting the days until Spring Break. We aren't doing too much, but Elijah and I will be going to a Dallas Stars Hockey Game next week. Jacob did not want to go so my brother Jerry is going with us. We got free tickets from the hearing foundation who has helped us with a great deal of our expenses with Elijah's cochlear implants and therapy.

Elijah is doing GREAT in school right now. He has had SEVERN good days in a row. He had to take 5s or take 10s yesterday or today. This is excellent for him. It means he is complying more and not argueing. His tics have improved dramatically and he has them a lot less. He is really enjoying recess. He told me it was his favorite thing at school when I asked him. I really do appreciate how well his teacher works with me and HOW hard she works with him!

Jacob is still an eating machine. I wish he would get over his moodiness, but oh well, I guess it is part of being a teen! He is still a handsome kid and so good at heart.

I made reservations for a five night stay at Orange Beach in June! My sister, her son and my mom are going too. My mom will be staying with me and my sister and her son will stay with one of our relatives who has a house at the beach. Elijah really LOVES the beach. Jacob does too, but worries about getting sunburned. Those two have the red hair and blue eyes and BURN very easily. I am going to have to stock up on sunblock....bullfrog has been the best for them!

I am excited about seeing family when we go. My grandmother and many of my aunts, uncles and cousins are in Mobile. We will spend one night there!

I need to get my camera and get more pictures of my two boys! I'll try to do that soon. I hope everyone enjoys the rest of their week!

Jacob--The Eating Machine

I was always told that teenage boys could eat a LOT, and now I am finding that out first hand. Jacob can really put away some food when he wants too. If he is not eating a meal, he is snacking in between. I even have to specify which snacks are Elijah's and which ones are Jacob's so I have food for their lunches for school. If not, I would get up to make lunches and have nothing in the house. I buy Jacob a quart of chocolate milk each week(he doesn't like the chocolate milk in the plastic conatiners, so I have to get it in the traditional paper square types and they only come in quarts) and he drinks it in about 2 days. He will drink white milk, but the chocolate milk is a nice treat for him.


I bought some blueberry bagels at Sprouts last week to try and told him he could eat them if he liked. There were six bagels and I think I got to eat one of them. I'll buy two packages this week. I usually eat my slim fast bars, but these bagels are about the same weight watchers points that the slim fast bars are and I like a change.

This morning Elijah and I ran to eat at Ballard Street Cafe here in Wylie and then to drop my car off to get an oil change and tires rotated. I never have time during the week to get this done. Neither of us like hash browns so I brought them home for Jacob along with a pancake from Elijah's meal. Now Jacob never gets up early on Sunday mornings, but I woke him up a bit and told him about his breakfast that was in the fridge. He got straight up out of bed and came in here to eat. I guess his stomach can motivate him more than me.

He has matured some and will ASK before raiding leftovers. He knows I plan to take them for lunch sometimes at school or have for dinner the next night.

I have been told by others who have raised boys that it will only get worse. I hope I can afford this boy. Eljah will be ten soon, so I have a few more years before he starts eating me out of house and home too.

Meals and Family

Night after night I have to decide what to cook for dinner. I really don't mind cooking, I just run out of ideas. I am not the best cook and I like things that are easy to cook. I don't mind cooking something more complicated on the weekends when I have more prep time and cleaning time after the meal. I have the usual meals that I cook, and try to rotate out so the boys don't get tired of them. So, I am asking for your favorite recipes. What do you like to cook!

One of my favorite recipes that is easy is a pot roast in the crock pot. It so SO easy. I have a large crockpot and I put in two cans of cream of celery soup and two cans of cream of mushroom soup with a pinch of beef bullion. You let it cook 4-6 hours depending on how big the roast is!

Another easy crockpot recipe is chicken breast with cream of chicken soup. Put it in the crockpot and let it cook. I use four cans of soup and four chicken breasts. I cut the breasts up to make sure they get good and done.

Let's hear your favorite recipes.

What if?

So many of us goes through life wondering, “What if?” on so many things. What if I had left earlier, would I have been in that wreck I just passed? What if I won a million dollars in the lottery? I used to ask myself that “What if” question quite a bit. My questions were wrapped around Elijah:

What if Elijah had not been premature?

What if he had not been deaf?

What if he could have been implanted earlier than 18 months of age?

What if he had not had tourette syndrome along with OCD and ADHD?

Like I said, I used to ask myself these questions a lot, along with some other typical “What if” type questions. However, as time has passed I have learned that I cannot dwell on the “What ifs”. These questions get me nowhere and only cause me to dwell on what could have been then on what can be! I have learned to accept Elijah for who he is. We have not had to deal with all of this at once, thankfully. Elijah’s deafness and prematurity came first! Tourettes, OCD and ADHD came later.

We are on a journey and sometimes it is a fun one and sometimes it can be quite scary. Jacob is part of that journey with us and he makes it even more interesting. He is the typical older brother with Elijah but he also watches out for him. He is a great help to me and a great son! I cannot imagine my life without either of my boys and so I cannot dwell on the “what ifs” either, because what if they had not come into my life. That is unimaginable.

Now, I still do daydream about the lottery! I have all kinds of plans IF I were to win that!!!