Special Needs

So, after months of tip-toeing around, dodging any and all indications, avoiding and ignoring--I finally found myself coming face to face with those damning words: "special needs."

It happened in the most innocent of situations. I was having a conversation with the director of Brandt's daycare. We were casually discussing some of the recent changes in her staff and some of the improvements that we were seeing. She mentioned that Brandt's new teacher had worked there before and was highly experienced with toddlers, as is clearly evident in her classroom instruction. And, then, the director pointed to another teacher, stating she had worked there before too but had to leave to take care of her family. She then proceeded with "she has a special needs child too."

Too--as in also. As in she has a "special needs" child, just like me. Hearing Brandt being associated with those two words left my completely dumbfounded. I mean, I know that Brandt has a profound developmental delay in communication and gross motor skills, but I just never associated him with those words. Yes, Brandt is behind. Yes, he requires extra assistance and understanding. Yes, he receives special support to meet his needs. So, yes, I guess he is special needs.

I am not mad or resentful at the director for stating the otherwise obvious. She and her entire staff have been so accomodating with Brandt, allowing his physical therapist into their facility and providing him extra time to develop before moving him to the toddler room. They have given him extra attention, and he gabbers up a storm when he sees them!

Still, coming face to face with that term was not easy. No parent wants to hear that their child isn't perfect in every way. And, then, that term "special needs" comes with this ugly stigma of people who are less capable and not self-sufficient. And, though I believe that to be completely untrue, part of society has made that a viewpoint. So, I hate to damn my child to such s stigma so early in life.

For all I know, he'll continue therapy and catch up in a couple years. There is nothing found so far that would support Brandt having a diminished learning capacity. So, when I think about a label for Brandt, I purely think of him as "developmentally delayed," not so much as "special needs."

I know people are extra supportive of my journey with Brandt, but sometimes hearing certain words just stings a little. And, no, I'm not going to be "one of those parents" who are so in denial that they aren't able to get their child the support they need. That is not me at all, and I made myself a promise not to ever be in denial with Brandt when our journey first began. Just, every cut (no matter how shallow) will sting a little. But, I'll bandage this one up and move forward a little stronger with my head held high!

Chronic

In the spirit of blogging all that has not been blogged, I have decided I must quickly blog this blog! To catch new followers up with the happenings, I will quickly start with a preface for which I will blog.

When Brandt was almost eight months old, he had gotten really sick and started wheezing. Unfortunately, because Darrin and Nick both suffer from asthma-to-the-extreme, the pediatrician had referred us to a pulminologist. Of course, in the spirit of doing what was best for our darling baby boy, we quickly made an appointment and went to see the pulminologist. The pulminoligst listened to his lungs and ordered some blood work. He told us to continue the doing the pulmicort breathing treatments once per day and the albuterol every four hours. He added in a daily dose of Zyrtek and sent us on our way. About a week later, our pediatrician's office called us back with the results of the labwork. The nurse noted that Brandt's white blood cells were low, and the doctor started him on an iron supplement. The nurse continued to review the results with us, stating that all else was in normal ranges.

At the time, it was a huge relief to know that everything was okay with his respiration--we had just begun the process of having Brandt evaluated for speech and physical therapy. He was being attended to by a neurologist, geneticist, and cardiologist. We were diving into some very weary waters, and, at times, we had felt as if we were drowning in the tides. Because the blood work from the pulminologist had come back normal, we both took a deep breath of relief from the otherwise unforgiving waters, and we decided there was no need to continue seeing a pulminologist. We continued his breathing treatments and medicine as prescribed and went on battling the bigger waves.

Months went on, and Brant was continuously sick. He was on every antibiotic imaginable, one after another. His breathing treatments continued, but no one could tell me how I could better help him heal and prevent recurrence. Finally, after six months of him being sick non-stop, the pediatrician decided to increase his breathing treatments and add in Nasonex. That didn't do anything, the upper-respiratory infections continued to mount--one after another--until I finally decided we needed to return to the pulminologist.

In returning to the pulinologist, we received some shocking news. The doctor gave Brandt a physical exam, and then he pulled out the results of the lab work that Brandt had done six months prior. As he was going over everything with us, he got to a particular lab and paused. His face grimaced. He then asked us if Brandt was up to date on all of his immunizations. I was shocked and wanted to know the rational behind his questioning. We are good parents, so of course he was up to date on all of his shots. But, then came the explaination. The doctor said that his labs--which the pediatricain had previously indicated as normal--showed that one of the vaccines that Brandt had was unresponsive in his body. He would have to have the Prevnar vaccine again. This vaccine is meant to protect his body against different thirteen different strands of respiratory illnesses.

The doctor wrote us a prescription to start Singulair, get another dose of Prevnar, and have a face Xray. We quickly followed the doctor's orders and returned for a follow-up. Since starting the Singulair, Brandt has not been sick. In fact, he has been going strong and healthy for nearly three weeks now--which is a record for his six month's rampage of illness. The lab work found that he has a high allergy to pollen and ragweed. The Xray found that he has chronic sinusitis--which was more like a "well, duh!" The pulminologist continued to explain that there are things that can and should be done for that when he gets older, but for the meantime we just have to work on trying to prevent recurrence. He order another a 14-day dose of antibiotics and a week of steroids--which completely annoyed me because this is the healthiest he's looked in half a year, so I guess this is just one of those times when I have to trust the competency of the doctor.

In trusting the doctor, I hope that we are moving in the right direction. I hope this is a move that will get Brandt healthy and prevent further illness. But in the grand scheme of things, it just another a little wave in the riptide of life.

Speechless

Bloggers--please forgive me for being so late on my post, but it is a crazy life when you are a working mom!

That being said, it was a long summer of phone tag with Early Steps, which began in mid-May. (Early Steps is a government-funded program that offers physical, occupational, and speech therapy to struggling children ages 0-3, regardless of ability to pay.) I left several messages with my family service coordinator, the serive coordinator's boss, and her bosses boss! Sometimes you just have to work your way up the chain when you are trying to fight for services for you child. When I finally got to talk to the right person in mid-June, they did a temporary authorization for Brandt to do speech two times per month until we reconvened for our scheduled Family Service Plan meeting in September. I was okay with the temporary authorization because I knew that he needed something since he's basically speechless, and I figured it would get increased when we meet in September.

Because Early Steps does not have many providers, they referred me to a local pedicatric therapy facility. Once contacted by the facility, I was informed that they had a three to four week waitlist. Great--brickwall. I patiently waited for a month, until I was finally back on the phone with Early Steps. I hated waiting when I knew that waiting just meant that my son was falling further behind. Finally, two weeks ago (mid-Aug), the local pediatric therapy facility called me to book an evaluation!

Last week, Darrin took Brandt for the speech evaluation. Generally, that's an appointment that I would have liked to of been at, but that was my first week back to work--which means back to picking and choosing which appointments I really NEED to go to.

The evaluation went really well (depending on your opinion of what "well" is). Darrin was a little frustrated with some of their questions--especially when it came down to them wanting to know dates for milestones he has reached--but that is understandable for him when there was so much depending on his answers. The speech pathologist did a few activities and measures with him to test his abilities in communication skills. He scored slightly below the norm in understanding and significantly below the norm in speech. Based on the data, they determined that Brandt needs to do speech therapy two times a week.

I am thrilled that we can get him the services he needs, but that does not come without some stress. Early Steps only has authorized two visits per month--and since there are eight weeks in a month--we are stuck with the copays of six extra visits a month at $40 per visit. And then Darrin and I have to figure out how to add those appointments into our already-busy work schedules. The facility was clear that if we missed more than three visits, we would be discharged. So, it is another brickwall.

Meanwhile, speech therapy cannot begin until the facility receives authorization from our private insurance company to go ahead with the treatment plan.

I have began the phone tag with Early Steps again to see if they can't change their authoirzation, but they are back to not returning my calls again. Great--brickwall. Still, I am scheduled for my Family Service Plan meeting at Early Steps in a couple of weeks. They better be ready because I am fired up and ready to fight for my little boy. He has a physical therapist that goes out to his daycare, and I have already voiced that I want the same with his speech. So, I can continue to fight for a speech pathologist who can go out to his daycare, and then I can begin the process of fighting for him to get occupational therapy, too.

Years ago, parents did not have to fight this hard for services. Our failing economy is failing our children today and their futures tomorrow. I hope things will start to turn around soon--before too many of our children are left behind.

Patches

Having a child that is developmentally delayed presents many challenges--inside and outside of the home. One of the biggest challenges for a child with special needs is finding a safe, dependable childcare facility.

Brandt's current daycare, Little Steps to Bright Futures, is a very nice, clean facility with high security features. They provide families with daily individualized reports and weekly lesson plans. But, Brandt does not necessarily meet the mold with his delays, and he tends to acquire many bumps and bruises.

After much debate and frustration with Brandt's current situation, I decided to tour Patches. Patches is a pediatric nursing care facility. It is open the normal hours of a daycare, but it also offers on-site physical, occupational, speech, and respiratory therapy. In fact, most children in the facility do all disciplines of therapy daily! And, they even offer transportation to and from the facility, if needed.

I was blown away by the amount of services provided. If Brandt was doing physical therapy every day, he'd be walking in no time! His range of sounds would quickly expand and turn into words. He'd learn ways to better help himself and move towards independence. I can't even begin to fathom if Brandt was receiving all of those services on a daily basis. That's just amazing.

On the flip side, the facility is overcrowded. They are in the process of expanding, but the final product is months away. When I toured, it just seemed like a big cluster of like thirty or so cribs and pack n plays (none of which matched), and then I turned the corner, and it was wall-to-wall highchairs.

Also, I feel it is noteworthy to mention that there were two toddlers sitting in highchairs in front of a TV--which really bothered me. First off, Brandt doesn't even have a long enough attention-spam for TV. He shows no interest for it at home, and I'm not too keen on all that TV anyway.

Then, there is the range of children they service. Children at Patches range from minor speech and motor delays or asthma to the most extra of cases, like children who are bed-bound with feeding tubes. And, in their current facility, they are all together in one common area.

But, after asking questions about their services and routines, it came down to logistics. Brandt simply cannot go there. The only way for a child to attend Patches is if they are on medicaid. And, just so we are all on the same page--I'm way too rich (huh, if that's what you want to call it) to even qualify for medicaid.

And, so, that being said, it is nice to know that needy people in the community have that resource available to them. And, for now, Brandt will have to continue taking his "Little Steps to Bright Futures."
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Drained

This summer has all been about getting Brandt the best possible medical care, but that has meant 2-4 doctor's appointments per week. He has been to every type of doctor imaginable: from atleast 10 visits to the pediatrician in the past two months to his weekly physical therapy. Then, we factor in trips to his pulminologist, neuro-opthamologist, geneticist, neurologist, otolaryngologist, cardiologist, and imaging centers... Did I leave anyone out?!?! We have done local visits in Port St. Lucie and Jensen Beach and traveled down South Florida to Jupiter, Loxahatchee, and South Miami.

He's been stuck with needles at least twice a mouth since March, from IVs to labwork. They've tested him for an array of genetic and metabolic conditions. He's had allergy tests and immune-deficiency tests. And, then there's monitoring his complete blood count to watch his anemia. Factor in his regular immunizations and an occasional antibiotic shot, and you'll understand why this kid does not like to be touched by doctors or nurses.

On a daily basis, Brandt takes at least six different medications--and that's assuming he's not sick. He takes albuterol and pulmicort around the clock for asthma. He takes Nasonex and Zyrtek for allergies, and he takes Ferrous Sulfate and Poly Vi Sol w/ Iron for his anemia and immune health. And, yet, he is ALWAYS sick. So, then they factor in an antibiotic and steroid--and maybe even a shot or two--and he's still sick.

We've been going nonstop all summer--but for what? Yes, physical therapy has helped Brandt to increase strength, and now he is crawling strongly with his belly off the ground. No doubt, that has been a success. But what about the rest of it? We have spent thousands and thousands of dollars on Brandt's medical care in just the past few months. Add on another grand for traviling expenses--hotel, gas, food. And, yet, we are no further into knowing what is causing all of these delays. We are no better off preventing Brandt from getting sick, no better equipped in helping him recover when he is sick.

So, one must wonder--when does it end? Will they figure out what is causing all of his delays? Will they ever be able to better manage his asthma and allergies, or is he always going to be sick?

I feel so helpless for him. He's always sick and crying, and I'm always exhausted. I spend every waking minute (many of which are in the night hours) trying to make him content--from playing with him to holding him around the clock to driving him in the car to sleep.

It's been a long, hard summer, and I'm exhausted. I'm not sure how much more fight my body has to give, and I'm not so sure that any of the fight will ever yield any results.

I'm not trying to sound so down, but I am truly drained... God, give me strength
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The Day from Hell

Brandt was scheduled for his forth attempt at MRIs today, and it truly was one disaster after another.

First, we arrived to the hospital a little early--mainly because we didn't want to sit at home and try to keep Brandt distracted from food. Once we got to the hospital, we checked in at registration. For some reason, they never did get the copy of Brandt's physical and health history that the pediatrician's office said they had--luckily I had a copy of it in my binder so crisis averted.

Then, we were called back to pre-op where we were assigned a nurse to do vitals and a physical exam. A member of anesthesia came to go over the procedures, and as he was questioning and then explaining I got so lost with what he was saying. I asked him to repeat himself--and as he proceeded to talk about an"EEG" and "when we have our MRIs later," I knew wires got crossed somewhere. Apparently, they had booked us for the wrong procedure--even though they had the doctor's prescription for MRIs! They swiftly had us pack up and move to the correct pre-op room. Crisis averted.

Once we got to the new pre-op room, the process started over. A new nurse, new vital signs, and a new anesthesiologist. He said that he wanted to give Brandt a much safer oral anesthetic, instead of the general anesthesia he was scheduled for. I figured that was great, because it would ease some of Darrin's fears. Once they gave us the clearance for MRIs, we waited for nearly two hours before someone from transport came to get us for the procedure. They told me it was important to keep Brandt awake in order for the oral anesthesia to work, but that was a challenge in and of itself.

Once they got us to MRIs, it was another nurse, more vitals, and another hour of sitting and waiting. Apparently since we weren't scheduled correctly, we had to wait for the MRI room to empty. And once the room was emptied, the nurse realized she didn't have enough of the oral anesthesia, so we had to wait for someone to bring it up from pharmacy.

Finally, the anesthesia arrived, and after 20 minutes of fighting sleep, Brandt was out. They wheeled us off to MRIs with Brandt sleeping on me. I carefully placed him on the imaging table as the nurse and radiologist began to strap him in. Darrin and I were allowed to stay in the room, so we took our seats in the back as they began to push him in.

And, then the nightmare continued. Not even a minute into the procedure, and we hear Brandt scream and then cough. Respiration dropped. The radiologist and nurse came flying in and pulled him out, threw him into an upright position, patted his back, and administered oxygen. His respiration was back up, but he was screaming and frantic--I held him in my arms and wiped away his tears. I rocked him and rubbed his head, and he was out again. They decided to continue. So again I placed him on the table while they strapped him in and wheeled him under. Darrin and I sat down, and it began again. This time, we sat and I prayed that he would be ok and be able to finish the imaging. He went another twenty minutes--and then another coughing fit and the ladies came running in again, unstrapping him and clearing his airways. The nurses said it was no longer safe for the procedure to continue. We went back and forth, and she finally said she would leave it up to the anesthesiologist.

The radiologist came in, and I asked her if she was able to complete any of the imaging. She said no--that she had two more parts of the brain to do, and she did not do any of the spine yet. I asked her if those other two parts were very important, and she told me that one of them was the most crucial image of the whole brain. Five more minutes, tops, and the brain MRI would be complete. She said if we could get him back to sleep, she'd give it a try, but he was too agitated to sleep.

Yet another member of anesthesia came in, and he said since the other doctor ordered the liquid anesthetic already, he would not administer general anesthesia in the same day. He went on to say that with the degree of Brandt's cough, he wouldn't have administered any anesthesia to begin with.

So, while in recovery, the nurse put me back on the phone with scheduling.

After spending the whole day bickering back and forth with Darrin, I'm not sure how I can really do this again. And not just arguing today, but the past four months of us arguing. Neither of us have been without fault, but the constant disagreeing is truly wearing on me. I'm at the point where I'm just not sure how much more I can do alone. I'm tired of us being so against each other, and I wish that we could be on the same page--but we're on opposite sides of the world.

So, I try to push forward, but I'm really lost and not sure what I'm pushing for anymore. Darrin says the MRIs are all about ME getting MY way and that having a diagnosis won't make Brandt better, although he disagrees that anything is wrong. He stresses that if they find something wrong with the brain, they can't do anything to "fix" the brain. And, I just don't know anymore.

All I do know is that today is the day from hell...
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