We All Have a Cold!

I have been dealing with cold symptoms for a week now. It started with sneezing and then congestion. I bought some daytime/nighttime cold relief tablets and those have helped a lot. Now my honey has my cold and so she is on the same meds. Last night, I heard Elijah coughing in his sleep so I went in and he was half asleep. I gave him a breathing treatment and some Mucinex DM. I also gave him a cough drop and he slept through the night.




CVS had a really good sale today, so I went in and bought some more Mucinex (I had a $5 coupon, woohoo) that was on sale. I also got some Zicam tablets and Zicam nasal spray that was on sale. There were SEVERAL things that I needed that had Extra Care bucks attached to them and so I ended up with $16 in extra care bucks. I also had several coupons. I purchased everything with extra care bucks first and then bought the cold stuff with a second order so I could apply the extra care bucks. I also had $8 in coupons for the first order. Overall, I saved about $24 between the two orders and got some things we needed!




I will continue breathing treatments for Elijah today. I also gave him the Zicam tablet and Zicam nasal spray. I used both too! Hopefully, we can knock out these colds soon.

Follow Up on the Cough

I took a half a day and took Elijah to the pulmonologist on Wednesday of last week. His breathing test was not as good as the one he had back in March. The doctor decided to put him on steroids for five days and gave me a prescription for an antibiotic as well. He also increased his inhalers to 4 puffs 4 times a day for a week of albuterol. Then for another week it would be three times a day and then back to two times a day and only two puffs.

I kept him home on Thursday, because he didn't sleep well and I wanted to get in breathing treatments over just using the inhalers. I also knew he would be wound up on steroids and he was. By Saturday, the cough was about the same so I filled the antibiotic prescription. Today was the first day that I haven't really heard him cough much. He it using his inhaler at school with the nurse watching him to be sure he is doing it correctly. I am glad he is over this hump. He has not had issues like this in a long time.

We already had an appointment for June 9th and we are keeping that one as a follow up for this cough as well as a typical check up. I am fortunate to have a doctor who is very pro-active when it comes to asthma! Some people wonder why I keep using a pulmonologist, and not just my pediatrician and this is why!

Elijah has a Cough

Elijah has a cough. It is most likely due to the change in the weather. The rain came in and so did the cool air. He has had the cough since Sunday. If he were a typical kid, I would just keep an eye on him and give him allergy meds, but this is Elijah. His lungs are not at 100% and may never be at 100%. His premature birth and being on a ventilator are the reason for issue with his lungs. He was on a high frequency ventilator for five days and on a regular ventilator for seven more days. The ventilator saved his life, but it also damaged his lungs. Thankfully, he has not had a cough or issue for over a year. I will call the pulmonologist tomorrow morning and see what the nurse thinks. I gave him a breathing treatment Sunday night, last night and again today when I got home from work. He will take another one before he goes to bed. I have also given him Mucinex.

I know I may sound like a hypochondriac when it comes to Elijah and this cough, but if I am not vigilant he can get sick very quickly.

The Flu!

Elijah has the flu! He told me he didn't feel good last night and even wanted me to feel his forehead. He didn't feel warm, but boy he sure acted like he didn't feel good. He has had a cough for a few days, but it didn't seem serious. Well, he woke up feeling warm this morning and still not looking good. I did the web check in with CareNow and we got in around 9:30. The flu test came back positive and they did a lung X-ray based on his respirations and heart rate. There is one spot on one of his lungs that is questionable and could be pneumonia. I'll get up tomorrow morning and call his pediatrician and get him in to see her. The clinic wanted to see him again, but said we could follow up with his regular doctor if we wanted, so that is what we will do. He has also had several breathing treatments today.

Poor kid took off his processors two different times to nap. The doctor put him on Tamiflu, an antibiotic and a cough syrup. He is now asleep in his bed, but I'll be listening for him tonight!

LABELS!

We live a life in which we are all labeled at one point or another. When we are born, we are labeled as a boy or a girl. We are labeled by our race, hair color, eye color and how big we are and all of this happens on the day we are born. There are many other labels that come later. Some of them are nice to have. Labels that tell us how smart we are or that we are loved by somone. However, many labels that are given to children in school are usually not fun labels. Many of them are generic labels that are used on MANY children. Then there are the labels used in special education and medical professionals.

Elijah was labeled as a premature baby on the day he was born. He then received the label as a child with a hearing loss when he was five weeks old. This was confirmed four weeks later. He went home on oxygen and received the label as medically fragile having a reactive airway. Grant you, he was not as fragile as many children, but he certainly wasn't healthy.  These are the  labels he lived with for a long time. I like to remember that he was and still is a blue eyed red headed precious boy!

Elijah started school at the age of three with the label of auditorially impaired(AI) and wears cochlear implants. Auditorially Impaired is the Federal term used for a hearing imparied child. He started off as a total communication AI student and then later was labeled as an ORAL AI student. He was also a child with behavior issues and later earned the label of ADHD. He started medication and things were OK for about 18 months and then the tics started. At the age of eight he received the label of Tourette Syndrome and a few months later the label of OCD. These were given my medical professional and at school fall under OHI(Other Health Impaired). The school sent forms off to his doctors and one of them decided to put the label of Aspergers on the report. The school called me and DID NOT agree with this label at all and neither did I. I called the doctor and had it removed.

Elijah has lived with these labels most of his life and have overcome many obstacles. We are planning on taking him to a camp for kids with Tourette Syndrome in April. I completed the application and sent it off about two months ago. His doctors then needed to complete a medical form for all of his medications and I just recieved the form from his psychiatrist. All of his labels were listed along with PDD-NOS. This is an acronym for Pervasive Developmental Disorder that is non specific. Basically it is atypical autism. Well, here we go again. I looked up this disorder AGAIN and this is what I found.

As for the other PDD's, diagnosis of PDD-NOS requires the involvement of a team of specialists. The individual needs to undergo a full diagnostic evaluation, including a thorough medical, social, adaptive, motor skills and communication history. Other parts of an assessment can be behavioral rating scales, direct behavioral observations, psychological assessment, educational assessment, communication assessment, and occupational assessment.

I have to say I am more than just a bit irritated with his doctor. She sees him for 15 minutes every two to three months. A full diagnostic evaluation has never been done on him for PDD-NOS or any form of autism. Many hearing impaired children may show symptoms of autism as do some children with Tourette Syndrome. I don't believe hs is PDD-NOS and neither do the deaf educators who have worked with him for YEARS.  This is one label that I am not going to allow to be used with Elijah. Assumptions are made with labels, and he already has way TOO many and doesn't need another one. We go back to his doctor in May, and I guess she and I will need to talk.

The Wind Brings a Cough

The wind has really come through today. We had gusts up to 30 mph this afternoon and they are supposed to get stronger tonight. Elijah had good day at school and we had a nice night together. I put him to bed and within 10 minutes, THE COUGH starts. Now this just isn't your regular cough, this is that "OLD MAN WHO SMOKES 2 PACKS OF CIGARETTES COUGH". I immediately go back to his room and he informs me he has a cough. He follows me to the kitchen and I give him a teaspoon of prescription cough medication, that has codeine. The bottle said 5 ml and when I measured from the spoon into an actual small 5 ml measuring dispenser, what I had given him wasn't enough. SO, I gave him a bit more and a breathing treatment.

All of this kept him up longer than his usual bed time. He is usually OUT by 8:00 or 8:15. I emailed his two teachers to let them know what was going on, because between the prescription cough medication AND staying up a bit later, his behavior could be ALL over the place tomorrow. He is fast asleep now and I am hoping that this was just a small flare and all will be better tomorrow. It never fails though, we go to the pulmanoligist and get a good report and then a week later, he is sick! Keep him in your prayers that this will all blow over!

Medication

Elijah takes a great deal of medication to address his Tourette Syndrome, OCD and ADHD. He also takes medication for his asthma. We recently changed his ADHD medication and he has been much calmer and more focused. We have noticed a significant change at home and we were glad to see that he had two very good days since we went back to school this past Monday.

Elijah brings home a status sheet each day that lists each class period. He can earn GREEN which means he behaved, a YELLOW which means he needed prompts and behavior was not so good, or a RED which means he had a really hard time in that class and there was probably a trip to the office to calm down. Elijah had ALL GREENS for the last two days. He was so proud of himself. Today he had six greens and one red. He had an extreme meltdown after lunch and his teacher had emailed me. She was curious to know if I might know what set him off.  I really had no idea. She also mentioned he had a bit of a hard time in PE and maybe that started it. Now Elijah gets NO iPad, nintendo or Wii during the school week. He had purchased a mini iPad of his own(saving for a long time!) and I told him if he had an ALL green day he could have 30 min on the iPad. I was shocked that he had had two all green days.....he had trouble getting even four or five greens in one day for the last few months. I thought maybe he was worried about getting the iPad and so that caused the melt down.

Well, later tonight, he went to take his evening medication and he says, "Mom, my Tuesday medicine is still in here." I went and looked and sure enough he had not take his medication last night. I always remind him to take it and he always goes and takes it. I remember reminding him last night, but I had not double checked to make sure he took it. I emailed his teacher to let her know that he had not taken his medication last night and this was probably the reason he had the melt down.

I know there may be many people out there who don't believe in medicating children OR adults, but Elijah couldn't function in the world if he didn't have his medication to support him!

Two Days of Doctor's Appointments

Having a week off of work usually means a few doctor's appointments for the boys. I don't like using my stocked up "leave" at work for doctor's appointments. I usually need them for sick days for me or the boys or for the random appointments we just can't get scheduled during a break!

It started yesterday with a visit to the pulmanologist for both boys. They both got a clean bill of health and we were done in about 90 minutes. This is pretty good for this doctor. We have been there for three hours before, for a scheduled visit...not a sick visit.

We came home and then Elijah and I went off for a visit to the audiologist in the afternoon. We made sure his back up processors were programmed and then did a hearing test. Here is how he did:

Right ear:
250 Hz    10 db
500 Hz    10 db
1000 Hz   10 db
2000 Hz   5 db
3000 Hz   10 db
4000 Hz   10 db

Left ear:
250 Hz 15 db
500 Hz 15 db
1000 Hz 10 db
2000 Hz 5 db
3000 Hz   5 db
4000 Hz   5 db

We were all pleased with the results. She asked if he had a favorite "ear" and I told her that he prefers his right ear over his left. She says that is pretty common for kids who had their implants done with years in between surgeries. I mentioned that he still has to wear his left "ear" because I know he gets benefit from it. When I have him wear only his left ear it NEVER falls off. He uses it just fine and hears excellently with it. I guess he just gets tired of all of the noise!

Today we went to see the psychiatrist. It was a quick visit and for now we are leaving all of his medications the same. She thinks he is doing well and that we just have to keep up with the behavior management.

The next round of doctor's appointments start with in January with a trip back to the psychiatrist and one to the endocronologist. We go back to the pulmanologist in February!

I have a lot to be thankful for:  Elijah's cochlear implants, medications for both boys that help with their asthma and for Elijah's Tourettes, OCD and ADHD, my sweetheart and for my extended family.

I hope everyone has a great Thanksgiving!

Friday Night is Pill Night!

Once a week, I sit at the kitchen table and get Elijah's medications ready for the week. He has this exact pill dispenser that you see pictured above. It really does help to have this organizer.Jacob takes two medications a day and I take three, so I get those ready two. However, Elijah's medications are the real work. He takes four pills each night and seven pills each morning for a total of eight different medications. There is one pill I have to cut in half! That makes life even more fun. He never complains and takes his pills each morning and each night. He even goes and gets them out of the weekly dispenser each night when I remind him to take them.

I so wish he didn't need all of these medications. There is one pill for his asthma and the rest are for his ADHD, OCD and tics. He also takes two inhalers in the morning and the same two in the evening! Some pills are yellow, others are green or white, but they all help him. His tics are about the same and throat clearing has been added to his list of vocal tics. I hate to say, but they wore me down today and so I know they must wear him down at times. If they continue, then I will call his doctor by Tuesday and see what she has to say. I have tried to catch him on video again, but if he hears me turn on the flip camera he just stops. Now some would say he can control his tics. Well, he can for a while, and then watch out...he explodes with tics. I just can't seem to catch them on video.

I am thankful there are medications that can help him. However, there is no blood test that can show which ones really help and HOW they help OR if we need to change something. It is all a big of a guessing game, and sometimes doctors make very good decisions and sometime we try something and it just doesn't work. I'll keep y'all posted on how it goes!

Thanksgiving Break!

The boys were off for the entire week of Thanksgiving. I had to work Monday and Tuesday. They actually survived being home alone together for those two days! I spent Wednesday running some errands and then we had a pulmanologist appointment at 3:30 that afternoon that went to 6:30. Not my idea of fun, but it was the only time that day they had available and I was trying to avoid taking a day off from work. Jacob grew over an inch and gained a few pounds. Elijah grew 1 cm and lost two pounds! Elijah sounded great and had a great breathing test. Jacob has a sinus infection and his breathing test indicated he hasn't been taking his advair like he should, so I am going to have to step in and monitor that more closely.

We drove out to my mom's for Thanksgiving dinner on Thursday. My sister and her son were there as was my brother and his family. He has one girl and one boy, who is now about 15 months old and of course was the star of the day. He entertained us quite a bit. We ate way too much, as you should on Thanksgiving and enjoyed some great desserts. The boys and I drove back that evening.

A friend and I went shopping on Friday morning, but it was late that morning before we got out. We still managed to find some great deals though. I got our Christmas decorations up on that day too, including the Christmas tree! My sister and mom drove in yesterday and we had dinner last night. Elijah got to spend more time with his cousins and they enjoyed playing on the Wii. We are recuperating today and gearing up for the three weeks of school prior to Christmas break. I am hoping Elijah will stay on track with his behavior. He was doing well the few days before Thanksgiving break! Jacob needs to buckle down and get his work turned in!

I will be busy with work over the next three weeks and with baking. I like to give cookies as gifts and they aren't hard to back but do take some work. I am almost done with my shopping, but still have some things left to get! Christmas will be here before you know it!

Medication!

Medication has done wonders for Elijah. He has been on one medication or another since he was born. Being born prematurely he was on medication to mature his lungs and to close a valve in his heart. He was on medication during his entire NICU/Spec. Care nursery stay to keep fluid off his lungs. He was on this same medication for a year after he came home from the hospital. He also came home on oxygen. He has seen a pulmanologist since the day he came home!

He has been on asthma medications since he was born and these keep him healthy and functioning. I am thrilled at the advances in medication since Elijah's father was a child. He is also on medications for his ADHD, OCD and tics from the Tourette Syndrome. These medications are a bit trickier to regulate and we have had many changes in the last three years since his diagnosis. I am also thankful for the doctor's that prescribe these medications and work with me to keep Elijah mentally strong and safe.

However, sometimes these medications can affect his personality in a way that is not good. He is on steroids and some very strong cough medicine with codeine right now. This makes him quite edgy and he is quick to anger, which is not a good thing for a child with neurological issues. He has had a rough few days at school and at home. I am hoping that by the middle of next week he will be off these medications. He will be on breathing treatments for the next few weeks and those can also affect his behavior.

I am also hoping that it is these meds that are affecting him and we will only have to deal with it for another week or so. I really don't want to have to tweak his other meds, because it is just scarey to do. We never know how it will affect him and he has been doing so well. I'll keep y'all posted.

Coincidence!

I stayed home with Elijah today to take him to the pulmanologist. He has had an awful cough for two weeks and we have tried breathing treatments and other meds. We stopped at Target on the way to buy some cat litter, it was on sale. I decided as we were walking in to get a vanilla latte at Starbucks. After I paid and as I turned around a woman said to me, "I think I know you. Was your son ever at Presby(Presbyterian Hospital) Dallas in the NICU. I looked at her and said, "Yes" as my brain tried to place her. She said, "I am a nurse there, my name is Jenna." Just as she said that my brain put it all together and I reached out and gave her a big hug as I said, "JENNA!!"

That is Jenna in the picture with Elijah on the day he came home from Presby. He was in the NICU for about 2 weeks and then in the special care nursery for another 2 1/2 weeks. Jenna was his nurse in the special care nursery during the day. She had him on pretty much every shift she worked. I have to say she was my favorite nurse during Elijah's entire stay int he hospital.

We sat and chatted right there in Target for about ten minutes. She thought she recognized me and then she saw Elijah with his red hair and his cochlear implants. We had seen her a few times at the NICU reunions that we had attended a few times in the first few years after he was born. She knew he had cochlear implants and remembered we lived in this area. She was amazed at how well he spoke and thought he looked great. I told her a little about his tourette syndrome, OCD and ADHD. She asked where he went to school and we talked about that for a minute. I explained we were on our way to the pulmanologist due to his cough. He really has been very healthy for the last two years! I also told her about this blog, so I am hoping she is reading it and catching up on him.

Seeing Jenna brought back so many memories. It is amazing that we ran into each other at all. I am usually at work during the time we were at Target and it would only be the summer when I might be in there on a weekday at that time. I usually go in on the electronics end of the store, but because we needed cat litter, I went in on the other end of the store. I remember seeing her as we walked in, so the timing on that is just amazing. I tend to think that we weren't meant to run into each other. I tend to think an angel pushed us both in the right direction to let us meet. I needed a real pick me up today and Jenna provided that. I hope she is reading this and knows what an angel she was when Elijah was under her care.

Update on Reward System

We are on day five of the reward system for Elijah and it seems to be working well. He is using more polite words and making better choices. He had two wonderful days at school. He earns tickets for behavior at school too. We are iced in again today!!! He will have to do some things around the house to earn his time for the computer and/or Wii. He has the choice of working on some educational games on the computer to earn some tickets too!!

His cough is still pretty bad. I may take a half a day tomorrow to take him into the pulmanologist. I am giving him breathing treatments pretty steady today to try to knock it out. He seems fine, except for the COUGH! He has had it for two weeks. There is no way to take him in today due to the ice. I already canceled one appointment for today and rescheduled it for next week!

OH I did get to tease Jacob this morning. He was hoping for no school today. He was still asleep at 8:00 and so I went in and said "Hey time to get up to go to school." He replied with REALLY and I said REALLY....he then sat up and started looking around. He saw how light it was outside and looked at me again and I pulled up the blinds to show him the snow. He said, "Thank goodness!" He knew by then school was canceled. This has been the worst winter. In the 20 years I have taught we have NEVER had five snow days!!!

Hope everyone out there keeps warm!

Iced in--Day 4

We woke up this morning to 5 inches of snow! Our district had already decided to close for today because we still had ice. The weatherman had predicted a light dusting of snow and here we are with 5 inches. I may try to get out later because I need more mucinex for Elijah's cough and maybe a few supplies. Plus we all just have cabin fever.

I am waiting on a call back from Elijah's pulmanologist. He has had a cough for a week and today it seems worse. I gave him a breathing treatment at 5:30 this morning when I heard him coughing in bed.

I hate to say it but Elijah is on my last nerve. He has become very arguementative and feels like he has to get the last word in. He has been this way for the last two days and is now in his room. He may just be there the rest of the day. I unplugged the Wii and moved it to my closet and have changed the password on the computer. I just don't get WHY it takes so many times for him to learn that back talk and attitude just lead to trouble for him. I am sure it ties in to his tourettes, OCD and ADHD, but it just gets old after a while. I hope I can survive the next two days!

Sometimes I Wonder!

Sometimes I wonder if Elijah will ever just be an easy child to take care of. If it isn't one thing it is another. Now, I know better than to complain...many children have a great many more issues than Elijah has but some days....some days I wonder if I can keep it up.

Between his processors, which are usually easy to maintain, but at times can be a huge responsibilty. Just the other morning, one would not turn on and we spent five long minutes trying to troubleshoot the processor. We finally figured out the controller was not working and pulled out his backup processor. Made for a stressful five minutes when you are trying to get out the door to school and work.

Today I took an hour long nap due to a headache. I wake up to him with NO shirt on. I figure he got warm and left it at that. I asked him to put his shirt on so we could go for a walk and his collar is all chewed up on a brand new shirt his grandma just gave him. ARGH! I can't even take a nap without something like this happening. It may seem like a small thing, but I am pretty sure this shirt is now ruined and it has been worn only one time.

Elijah also has a cough right now on top of Jacob having the flu earlier in the week. Elijah has been doing breathing treatments since yesterday morning. I have been talking to the pulmanologist since yesterday and he thinks things are getting better based on my reports and I agree, but it takes forever to get rid of this kind of cough.

It has just been a long day home today. Elijah has also been a bit arguementative and that gets on my last nerve too. Alright, I am done with my venting. Tomorrow is another day and at least I get to go to work!!!

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.

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!

Raising a Special Needs Child

I am the mother of a special needs child. I have worked with special needs children in school for the last 19 years and been around special needs children since I was a child. My brother has mild cerebral palsey and I remember going to his therapy sessions. I think this has helped me deal with my own son, even though he has a different disability.

I didn't know if I would be a good mom. Jacob was born in 1996, four years after my marriage to David. We planned Jacob and he was a gorgeous red headed little thing. I felt such an awesome responsibility when he was born and also a tremendous amount of love. When Jacob was 3 years old we decided to start trying for a second child and were blessed when I became pregnant within a few months.

Elijah's entrance into the world was bit more traumatic. He was born eight weeks early and came out a fighter. He would not even let the nurse intubate him. He was born in a small hospital due to the speed of his birth and transferred to a larger hospital with a NICU in Dallas. He spent 12 days on a ventilator and five weeks in the hospital. The day he was being released he failed his hearing screening and so it began.

Elijah had other challenges. He came home on oxygen for the first six months of his life. Our lives revolved around trips to the pulmanologist, developmental pediatrician, audiologists and pediatrician. Poor Jacob had to grow up so fast and be this big brother!

We did get into a routine and this became our life. I look back now and wonder HOW I did it. Packing Elijah off to the sitter's everyday with his little oxygen pack and pulse oximeter. He later got hearing aids around the age of 15 months and then his cochlear implant turn on at 18 months of age. We spent the next four years working on his language skills with private therapy. He started school at the age of three and language development is something was have always worked on.

He was always a rather "different" child and very rigid in his routines with lots of impulsivity issues. We discussed ADHD with our pediatrician when he was 5 years old and he started meds for that then. He then got the diagnosis of tourette syndrome at the age of eight, after a year of tics and not really knowing what was going on with him.

What is it like to be the parent of a special needs child? For each parent it is a little different, but I do think it comes down to acceptance. Even though I teach deaf children, it was hard to accept Elijah's deafness. I then had to accept the asthma and be ever viligant with his health. Now it is not too bad, but if he even coughs funny, and this goes for Jacob too, my ears perk up and I take an extra listen. Elijah's ADHD was not as hard to accept, so many kids have it and even his dad had it as a child. When I first suspected Tourette syndrome, after seeing an HBO special, I was in shock I think. I mean what are the odds of him having something that I had never really seen in person and at the time I thought was rather rare. I may have been in denial, or maybe just in shock, who knows. It has been a slow acceptance for me.

Understanding the behavior that goes with tourette syndrome is very difficult. I never really know which Elijah I will get from day to day or even from minute to minute. I think the hardest part is that I never really get to let my guard down. I can't just leave him with anyone due to his ever changing attitude. I hold my breath on days when I can sense he is "off" with his behavior and as I drop him off at school on those days I pray he has a good day. I wonder what others think of us when we are out in public and his behavior is all over the place. I am not talking about the tics, those are not a problem, but that behavior. I know it is a neurological condition that makes him act the way he does and I in turn parent in a way that is best for him, but others around don't know this. I am sure they think he is this little pain in the rear who should know better and why isn't that mom disciplining him. It doesn't bother me, but I hate it for him.

I am still learning so much about tourettes and all that goes with it. I have found some good resources and met some great people on this journey. Thankfully, Elijah's language skills and hearing loss are not a major issue so I can focus more on the issues at hand now.