Perfect Ending!

This has been a whirlwind of years.

January 2012, Brandt was just 7 months old and being watched by my friend. It was just Brandt and her 1yo daughter, and it was such a sheltered environment with no germs, clean surfaces, and the organic lifestyle. It was--perfect.

And, though we have always had our concerns with Brandt's development, March 2012 is when we started to face them. Brandt started at Little Steps to Bright Futures childcare, and he started the Early Steps program for early intervention.

May 2012, Brandt turned 1yo! But, sadly, did not get to move into the 1yo classroom til Aug 2012 because of his delays.

He went from not sure if he'll walk in March, to will need braces to help him walk May, to crawling with the aid of devices in August, to walking with aid of devices In September, to waddle-walking in October.

But, it was a journey...

Starting in March, we bounced from doctor to doctor. Under our belt, we had a regular physical therapist, but we wandered from neurologist, to a geneticist, to a otolaryngologist, to a pulminologist, to a cardiologist, to a different otolaryngologist, with return visits in-between. Testing started out with a basic CBC and a metabolic panel but quickly moved to neurological and genetic blood tests. And, as soon as that began, we were on to more complex testing--Hearing tests, Echocardiogram, MRI of the brain, MRI of the complete spine, EKG. We have heard everything--from it being cerebral palsy to a metabolic condition to anemia to a heart problem to a hearing problem--but we have found that we really know nothing at all.

By September 2012, I was burned out and ready to call the search party over. Brandt added speech therapy to his regular physical therapy regiment and those were enough for me. I had wasted "the baby years" chasing a ghost that just doesn't exist. I was ready to begin enjoying Brandt and spending time at the park, rather than the doctors.

Nov/ Dec 2012, Brandt was referred to a urologist and ordered to have surgery for an undescended testicle. And, in the waiting process was hospitalized with pneumonia. Once out and back to Little Steps, he caught a fungal infection from not being changed. Moved him to a private sitter and found a strong sense of calm again. But, still, four days before Christmas, had his surgery.

Spent the remaining two weeks of 2012 enjoying being Brandt Alan Forman--big boy extroidinaire! Read hundreds of books, played outside, rode bikes, lots of cuddling, a nice trip to Zoo Miami, and a very spoiled Christmas. Learned how to follow simple commands, stack rings, bark like a dog, moo like a cow, and identify several body parts! Lots of laughs and lots of love--perfect way to end the year!

It's been a hard journey, but I never would have been able to do it without the support of friends and family! Bring on 2013!

Post-Op Care

It's been a week since Brandt's surgery, and he seems to be healing quite well.

The first few days made me nervous with diaper changes--he was so swollen and bruised all over. He was pretty good with the pain though. He managed during the day, but we did give him a prescription at night to help him rest comfortably. But, after a few days, the swelling went down. And now, a week later, most of the bruising has gone down. The stitches still haven't healed and the bandages haven't fallen off, but they did say that healing would take about three weeks.

The hardest part of this whole thing has been keeping him from climbing and straddling. There have been a couple slip-ups where he's darted up the couch, and once when he climbed onto his Power Wheel when I wasn't looking. He didn't show any signs of pain, but I cringe at the thought that he could undo his surgical work.

We go back to the urologist next week for a follow-up so fingers crossed that he heals well.

Surgery Day: Updates

December 20, 2012--7:38am
Approaching Brandt's surgery has been weird. I think I've gotten so used to Brandt always being sick and having procedures scheduled and rescheduled that I truly did not believe today was going to happen. I just sat around and waited for him to start coughing or sniffling, or for a fever to spike. I was so apprehensive, in fact, that I even held off on requesting time-off and putting my sub job in the computer. I guess I'm just so accustomed to nothing ever going right for me. Yesterday, my blood pressure was surging, just thinking he still had one more day to catch Darrin's strep throat or some illness from the sitter--but we made it through the night without a cough.
It's early and Brandt is already screaming for food, so we'll see how today goes...
Stay tuned to this post for updates on his surgery.



December 20, 2012--11:40am
We are off to a rocky start. The doctor's first surgery of the day had complications, causing all of his other surgeries to be delayed. We were scheduled with a table time of 11:00am, but now they are telling me it will be closer to 12:30.
We just met with anesthesia. They will give him baby valium to relax him in about 45minutes. Then, once they take him back, they will gas-mask Brandy before putting in an IV. After that, they will put in a breathing tube for general anesthesia, and then he will get a shot in his tailbone to numb the pain that awaits him.
Meanwhile, he is getting very antsy and starving--not to mention Mom and Dad could go for a bite and cold drink right about now, too. But, all we can do is pace up and down the OR waiting pre-op until they call us.



December 20, 2012--12:55pm
Talked with the doctor and anesthesiologist. There questions were making me so nervous as we went through the laundry-list of current medications and medical history. I was waiting for something to hold us up --like his heart murmur and anemia. Like I said, I'm used to constant delays and setbacks.
At 12:45, a member of anesthesia took Brandt back. It was hard just handing him over, but it was also relief knowing that this will soon be behind us.
Now, we wait...



December 20, 2012--1:15pm
Comfort food lunch
Darrin: Cheeseburger, large fry, slice of pizza, king size Snickers ice cream, Sprite.
Valerie: jumbo hot dog, bag of Doritos, king size ice cream Snickers, jumbo Coke.



December 20, 2012--1:45pm
Just spoke with the doctor. Surgery went fine. Testicle was being held up by a hernia. Wouldn't even descend while at a complete rest. Down now. Hernia corrected. Stitched and bandaged. Brandt's in recovery, but we can't go back to see him until he starts to wake up. They said this is usually about an hour of sleeping after surgery. The waiting continues.



December 20, 2012--2:30pm
A nurse finally came to bring me to recovery and Darrin to another waiting room. From outside the door, I could hear Brandt crying "muh-muh" but he was quickly calmed by my soothing touch. He drank 4oz of pedialite without a second thought. We weren't in recovery long before they moved him to phase II.
In phase II, they took vitals and gave Brandt 4 more oz of Pedialite before he Napped in my arms for the next hour. He awake thirsty so the nurse have us the green light to give him apple juice while she was going over all the pre-op directions. Another twenty minutes, around 4pm, and we were out the doors and on our way home!



December 20, 2012: 4:30pm
We were only about 15 minutes down the road before things took a sudden turn. Brandt started projectile vomiting. As I'm telling Darrin to pull over, Brandt is continuing to spit-up every last ounce of fluids he had taken down. But, Darrin's cop-brain would not allow him to pullover on the side of I95--oh no--he has to wait until he gets to the next exit. Meanwhile, Brandt is continuing to throw up. I was freaking out and upset that he was more worried about a potential accident than our son throwing up. So, as I'm proceeding to clean off Brandt, he is yelling at me about he is tired of all of this stuff, and how could I not have a towel in the car, and that I'm a horrible person--although, his word choice was a little more blunt. At that point, I shut down. I was disappointed that after all we had been through, we were back to square one in the marriage department. But, whatever, all that matters is my son. So, I put a call in to the doctor, and I'm waiting to hear back. And, right now, that is all that matters.



December 20, 2012--7:55pm
After stopping at Walgreens to pick up Brandt's pain meds, we made it back home just before 6:00pm. Brandt was starving and continuously asking for food, but I was a little hesitant. I gave him a banana at 5:55 and then waited another 45 minutes before giving him half of a turkey burger. Then, just after 7:00, I gave him half a cup of milk. We waited another half hour before putting him to bed to ensure everything was staying down. Hopefully he'll get a full night of sleep--and mommy will, too!
Somehow, I survived the first two diaper changes, but they were just wee-wee. Not thinking it will be too fun to change a pooh diaper if it requires much wiping. He is looking like a swollen, bruised mess. Ouch!
Darrin did apologize for his behavior earlier, but I sat in silence as the tears poured out. There was so much going through my head, but I knew I'd lose it if I opened my mouth. I just feel like we need to me more united, especially in these moments of weakness. Hopefully we can continue to work through the hard times. Man, marriage is a lot of work! ;)
All in all, I am just so happy that the surgery happened on the first attempt and is now behind us!

The Big Jump from Little Steps

After two weeks of basically no sleep, I finally decided to move Brandt to a new daycare. The process was an emotional roller-coaster, but I think we are starting to settle in nicely.

The day after we left Little Steps, the owner called me. Still angry and sore with the treatment of my son, I waited until Friday to return her phone call. The conversation went in many directions. It started out where she was apologizing that this happened to Brandt, and that she understood my anger. She empathized and said she cared about the well-being of all the children enrolled, especially the little ones. She went on to explain that her aunt was the infant teacher and that her mom was the former one-year-old teacher, strategically placed to watched over the little ones. And, that is all fine and dandy. They are terrific teachers, but they weren't the ones taking care of my son. And, perhaps, someone in her family should have said something about all of the yelling happening in the one-year-old classroom. Just saying.

She went on to discuss the reoccurring rash, asking about the frequency of changes and the patern of rashes. She tried to reassure me that, should we return, she would have him changed every hour. The owner agreed that the statement made by the teacher that "Brandt's poop doesn't stink" was not acceptable, and she went on to say that this was not the standard and appropriate disciplinary action would be taken to prevent this from happening again.

Then came my biggest concern about Brandt getting dehydrated. I would send in 4 cups of fluids every day. Somedays, they would all come home empty, while other days 3 of the 4 would come back completely full. I mentioned to the owner that with Brandt having anemia and asthma, this was a huge concern of mine for his safety. If he is not getting enough fluids, he is more prone to falls and asthma attacks. This was a matter I had spoken with the director about several times and nothing was ever done to correct it. The owner insisted that he was probably drinking from the watercooler--which I doubt considering Brandt hates cold drinks and water.

The owner offered me many changes and accommodations, but since I had already enrolled Brandt with a private sitter, I decided to press forward with the move. I ended up eating two weeks of tuition with Little Steps--which makes me sure I will never return there again--but I feel it was well worth it.

Little Steps can make changes to their routines and personel, but they can't prevent all the germs. My kid ended up in the hospital for three days with pneumonia--that is something I can't look past. And he has pretty much been sick non-stop since he had been with them. And, they can't change their floor plan, which forced Brandt to walk through the dangerous obstacles of four-year-olds' classroom and the two-year-olds' classrooms. Not to mention, they have the infants and toddlers in the same room but separated by some toy cabinets and a flimsy baby gate. There were just so many health and safety concerns that cannot be corrected so easily.

So, it was worth giving the sitter a chance. The first couple of days with the sitter were a difficult adjustment for me. And, to be honest, I now attribute a bulk of this stress to be extremely fatigued. Still, I was so used to Brandt always coming home in fresh clothes and getting a daily report sheet with what he ate and when he slept. It was the little things that I had to just let go of--and,at first, I wasn't sure this was the right move. Still, I was determined to give it a fair shake and pressed forward the next week--this time, a little more rested--and I am so glad that I did. I started to notice a drastic change in Brandt's mood and energy. He is just so much happier and well-rested. Then, the diaper rash cleared--and this is the best his little booty has looked since the summer. And, though he hasn't been there long, this is the longest it has been that Brandt has not been sick since he was 8months old. The baby sitter texts me several times throughout the day with pictures and a daily recap. He still does crafts and learning, but he has the freedom to do things on his terms. It is just a better match for Brandt.

It was a big jump for us to leave Little Steps, but I think this was the best thing we could have done for Brandt. Things seem to be falling together quiet nicely, and I am very comfortable with where he is now!

Disaster in Changes

I'm still replaying it, processing it, trying to make sense of it all, trying to understand how it so quickly erupted into such a giant disaster. Just thinking about it is overwhelming.

It has been a long time coming, but it was not the easiest of decisions to make--today we put in our notice of withdrawal at Brandt's school.

Darrin and I had decided that we would be very civil about it and leave the door open for the future. We spent hours thoughtfully developing a formal letter and discussing what information we would divulge to the facility as to the reason for withdrawal. We decided to keep it simple and vague.

The decision to move Brandt was not a decision we took lightly, and it was also not the easiest of decisions to arrive upon.

First off, if I move him, will the new place accept Brandt's physical and communicational delays? Will they allow his therapists into their facilities? Or, will they say it is all fine and dandy until two weeks later when they see the full extent of the delays? Will they work with him academically and physically? Will moving him cause him more undue stress with separation and adjustment? Will there be weeks of him crying, as there was the last time we moved him?Will I end up with no one to watch my kid?

It pains me to say this, but taking proper care of Brandt is not the easiest of things. He has good days and bad. He has days when he will walk from room to room, and then there are days where he will fall every other step. He has days where he is all smiles and laughs, and then there are days where he cries for no apparent reason. There are days when he will nap three solid hours, and then there are the days when we are lucky if he will nap at all. Then, there are days where he will have a dirty diaper (code brown--LOL) 6-8 times a day--where I feel like I am constantly changing him. It is easy to get exhausted and drained. And, so, I know it is a lot for anyone to take on.

But, after months of weighing the pros and cons, I finally hit a wave of urgency that pushed me over the edge. Brandt had been coming home with diaper rash after rash. I would spend all weekend trying to heal him only to have another rash by Monday evening. When I asked why, the teacher said "his poop doesn't stink" so she never knows when he needs to be changed. That is not only absurd, but that is a lazy excuse. It completely outrages me. Then, the icing on the cake--one of the teacher shows up an hour late to open up--so I stood outside waiting and hoping someone was coming. And, instead of apologizing, the director says, "things happen." I mean, who taught this lady business ethics. I am just so over them, and I am thrilled that he will be leaving. The germs, the lack of professionalism, the lack of support with therapy... the list could go on and on.

So, I toured a few child care facilities, and it made me feel hopeless. As wonderful as they were, I knew that Brandt did not fit their molds. I knew that the places I liked would not accept him. So, I finally went to a friend's in-home daycare. I loved it! Less kids= less germs. Clean, wholesome, lots of crafts/ learning, organized.... the lady definitely runs it like it is her life! And, the best part, it is going to save me the time of preparing meals because she includes that in her rate--and the food is healthy food that I (the crazy health nut) approve of! I am so excited for the move!

Of course, my fears are still there, but I have made my decision. So, today I took the necessary steps to move forward--and it could not have gone any worse.

I handed the directory my formal written notice, and she directed me into a private room to complete some discharge paperwork. She asked me for my reasons, and I hesitated a bit before going into the most candid conversation I have probably ever had with anyone in regards to Brandt. I was open, honest, and in tears. Yes, I was outraged by the slip in standards, but I was also saddened that it had come to this.

Things weren't always bad. Little Steps has seen Brandt through some very challenging points in his life, and they never once judged him or gave him a second look. They have always treated him like a normal baby, except with a little extra attention and care. They welcomed Brandt's therapists into their facility, and he has made a lot of progress since starting there. They appealed to his love of music and arts and always found a way to accommodate Brandt. They made Brandt feel special, and they treated him special.

And, yet, we had hit the point of no return. The director told me I should have come to her sooner, and she is right. But, after going to her a few times before without much success, I just didn't see a point anymore. And, maybe we could have worked it out--but I also didn't want to be in a situation that was awkward or uncomfortable with Brandt's teachers. I didn't want them taking resentment out on Brandt, and I was also afraid that if I continued to complain, they would discharge him.

But, now, it was all out in the open, everything I ever held back or dismissed was addressed. The director was very apologetic and asked me to reconsider my decision, assuring me that these issues would not be taken lightly. She assured me that proper action would be taken to ensure these matters would not repeat. I informed her that I had already secured a sitter for Brandt, and that it was probably in his best interests to be in a smaller setting for a while in light of his continued respiratory infections. I told her that, perhaps, down the road when he develops a better immune system, perhaps we could reconsider enrollment with them. And, I meant that. And, she was hopeful of that.

But, just as we were wrapping up our conversation, Darrin came storming in the door--Brandt in his arms. He was screaming that he was reporting them to DCF and that he was going to sue. I don't even think he knew what he was spitting out of his unfiltered mouth. He proceeded to rip Brandt's diaper off and to show the director his diaper rash, now turned infection. He was shouting and frazzled, so he handed Brandt over to me and was gone. And, then, I was there apologizing and embarrassed--trying to put Brandt's diaper back on.

I was humiliated. I could not believe he had done that to me. We agreed that I would handle the situation, as he always passed off to me. We agreed that we would leave on good terms, and he repeatedly insisted on that. And, yet, he bursts in and exposes Brandt's rash? I was mortified. I understand that he was trying to make a point and upset; I just don't think that is the way to handle it.

I spent the whole evening begging Darrin to calm down, begging him not to file any formal complaints. I desperately argued with him--insisting that they would be handling the situation. I tried to explain to him not to fault the whole facility for the carelessness of one bad teacher. We have had a lot of good experiences, and we hold some fault in not addressing these concerns with the director as they occurred. And, I still believe that we probably could have worked through a lot of the issues, if I didn't have so many fears with talking to the director about them.

The whole evening was stressful, and now I'm questioning so many things. Another day where I just feel defeated and broken.

But, hopefully, tomorrow will be the start of something wonderful; hopefully tomorrow will not leave me questioning today more and more--we have hit the point of no return.

Here goes everything...

Shattered Joy

There are days when I am overjoyed to be Brandt's mom, days when I wish time could just stand still, when I want to cherish every last minute with my little boy.

With the start of Thanksgiving break, we hit the ground running with memorable moments. We spent countless hours at the park, playing outside, and riding the bike--things we usually can't do because he is sick. It felt so nice to be carefree and let loose. We read book after book and played with every toy imaginable. We made giant messes and didn't even think of cleaning up. He was smiling, laughing, gabbering--nonstop.

In fact, the gabbering has become more frequent over the past few weeks, and the gibberish is turning into precious words of hope. He says:
Dada
Mama
Uh oh
Duh-- dog
Doe--door
Shu--shoe or sock (LOL)
Nigh-Nigh-- night night
Yea--yes
Nuh--no
Moe--more
Jew--juice
Me--milk
You--yucky

With each word he has said, I have been ecstatic! He even responds to simple commands and questions like:
Let's go get a bath/ brush teeth/ get clean diaper/ get drink/ take medicine / sit in chair. Did you go poo-poo/ pee-pee? Do you want a snack/ a drink/ go night-night?

He's so stinking smart, and so darn cute! I've loved every minute of the break with him, and he has amazed me with his all-of-the-sudden vocabulary and direction.

That is, until therapy brought me back down to reality. Today was my first time to meet the speech therapist in person, and it was Brandt's third session with her. The therapist stated that those little jewels, which I call words, are merely approximations. And, while that is great, we need to focus on getting full words. But, in order to get full words, Brandt has to imitate sounds--something your average baby would start to do around 8months--which Brandt still does not do.

The therapist has also been using a oral sensory brush, which we've been doing at home too, but we're getting a lot of resistance from Brandt. And, for Brandt's biting difficulty, it was suggested that we consult a dentist about the alignment of his teeth and jaw--sure, I'll just add that to the list.

I'm not going to go into too much details on the rest of the speech therapy session, as the therapist just so happens to be close friends with one of my friends, but I will say that the session did not go so well and left Brandt very frustrated. I also hit a degree os setback, having confirmation of things I merely suspected. I hope Brandt can learn to warm up to her, and maybe he will be more receptive to when I am not present. She definately knows what she is doing and has a variety of techniques and great tools. Still, the whole session just really shattered my joy and left me feeling sunken and defeated. And, for a few days after, left me in a funk--but what else is new?!?!

Luckily, with Brandt, we have learned to not focus on all the things he should be doing but to appreciate what he can do and how hard he worked to get where he is. We press forward with the hope that he IS learning, just at his own pace. He is my amazing little boy, and I love him for all that he is and does!

Admitted

We can never just have a simple cold or infection. Whereas most kids go to the doctor once, get an antibiotic, and recover, Brandt usually requires two to three office visits, one ER visit, and like five different medications. With each illness, we usually spend $300 in copays to get him better. Pretty typical for us. But, this time trumps all others.

It was almost two weeks ago when Darrin was complaining to the daycare about a sick kid being at school. The director shrugged it off and said that they could not send home every kid with a runny nose and cough. Two days later, Brandt had a green, snotty nose. Knowing that Brandt has asthma and chronic sinusitis, we quickly took him to see the pediatrician last Friday. The doctor prescribed Omnicef, along with his breathing treatments. As the weekend went on, however, he worsened. He developed a productive cough, rapid breathing, inability to sleep, and a persistent fever. Brandt was coughing and crying all night. First thing Monday, Darrin had him back at the pediatrician's for another check. A chest X-ray found a large amount of fluid in his lungs, and he was switched to Augmentin. Fevers still continued, so we alternated Advil and Tylenol--but that was only ridding the fever for a couple hours at a time.

Finally, Wednesday night we could see that Brandt was not getting any better. He was continuously crying, and the only time he was comfortable was during his breathing treatments--which he would fall asleep during. We called the doctor, and they said Brandt would need to be seen again and have another chest X-ray. We decided to take him in first thing Thursday morning. Yet, we still had to make it through the night. It was a long night with no sleep. Fevers continued to soar, while fatigue was rapidly plaguing my exhausted body. At 2:00am, Darrin came in to take over. We talked for a bit and decided that something was seriously wrong. The antibiotics clearly weren't working, and Brandt was just getting worse. Darrin decided to take Brandt to the ER.

The ER did another chest X-ray and compared it to the X-ray from Monday (since our pediatrician and the hospital are in the same medical group, the previous X-ray was on file). They found that even more fluid was continuing to fill his lungs. Immediately, they wanted to run an IV for steroids and antibiotics. Only, with Brandt being such a "healthy" boy, they had a difficult time finding his veins. They stuck him in one site, wiggled and jiggled the needle around, but weren't able to make contact with the vein. They repeated this in three other sites before they finally got the IV hooked up to his foot. In the other foot, a respiratory monitor tracked the oxygen levels in Brandt's toe.

After contacting our pediatrician, the hospital decided to admit Brandt to the main hospital for pneumonia. But, because we weren't at the main hospital, we had to wait for an ambulance to transport us. I rode in the ambulance with Brandt while my mom and Darrin drove behind.

Once we finally arrived at the main hospital's pediatric tower, we were taken to a respiratory and observation unit to stay. It was a very intimidating room. We were greeted by a giant jail-like crib with an oxygen tent around it. Two shaded windows allowed the doctors and nurses to observe his vitals and behavior--in the event that respiration should start to decline. But, this was our home for the next few days, so we tried to make the most out of it.

The following 60 hours was all just a blur--partially because of exhaustion and partially because it was just one giant disaster after another.

The first night was exceptionally rough. Monitors were sounding every half hour. Sometimes it was the respiratory monitor slipping off his toe, while other times his respiration would dip. Still, other times, the IV line would become obstructed. Nurses were in and out for vitals, and the respiratory therapist was in every four hours for breathing treatments.

The next morning, the IV, which was so cleverly placed in Brandt's foot, got ripped out while he was sleeping. It took thirty minutes and attempts at five different sites before the nurses got another IV in. And by the time that was done, Brandt was soaked in sweat and passed out in my arms. Only, this time the IV was in the bend of his arm, and two hours later, it popped out again. Back to hunting for veins. Problem was, they had already collapsed three veins and bruised many others. The nurse tried wiggling and jiggling the needle at two sites before she finally decided enough was enough. And during all of these, Brandt was screaming, and fighting, and calling out "muh-muh" while I was having to hold him down. It was awful.

The second night was much easier. We were no longer awakened by monitor alarms, and Brandt's breathing was finally stable. The nurse and respiratory therapist still made their rounds. But, then, since he no longer had an IV for meds, this meant shots instead. And, there is nothing more heart-wrenching than holding your baby down at midnight while he gets two shots of antibiotics. It was too much, although much quicker than the thirty minutes of exploratory vein hunts for the IV. Still, I got some sleep, and my mom stayed with me to help.

But, by the third morning, we had all had enough. Brandt was tired of being restricted to the jail crib, I was mentally broken, and Darrin was bored with his TV selections (haha). We had been living off take-out, and the room seemed to be shrinking more and more by the minute.

And, FINALLY, at 1:00PM Saturday, we got the green light to go home. Of course they sent us home with some new antibiotics and steroids, and we have to continue breathing treatments every four hours. We also have to return to the pediatrician for a check-up on Monday. Still, I was so happy--I could've given that nurse the biggest hug of her life.

Oh, but if you want a good laugh, I got one for you! Every time, we requested more diapers and wipes, I would pack away some of the diapers! So, I ended up coming home with 50 free diapers--not to mention the like 100 free diapers the IV made him soak through in the three days we were there! I figured they were getting pretty rich off me anyway--150 diapers wasn't really setting them back much. :P

So, here is the tally thus far:
Three office visits: $60
Ambulance ride: TBA
Impatient Care: $500
Five antibiotics/steroids: $50
Two Breathing meds: $40
Take-out/Dining: $150
Having a healthy son: PRICELESS!

Unmentionable Circumstances

I'm sitting here slouched over on the couch--my body melding in with the leather--trying to replay and make sense out of the very overwhelming day we have had. It all happened so fast and my mind is bogged down with displeasure, so the words just aren't flowing so easily. It is just a very draining feeling.

And, by now, I suppose you all are wondering what I am talking about? Well... Brandt has to have another surgery. Whoa--too much, too fast? I guess I should rewind and start at the beginning...

When Brandt was born, our pediatrician noted that Brandt's left testicle was not fully descended. While it was palpable, it was not where it needed to be. The pediatrician said that it was fairly common and should self-correct within the first few months. It was noted at nine months, and at Brandt's one-year-old well baby visit, the problem was still present. Yet, the pediatrician said he wanted to wait a little while longer. So we did, and the problem never went away. So, at nearly 18 months of age, Brandt was finally referred to a urologist. The pediatrician's office called to schedule the appointment, and they had us at the urologist a week later.

Meeting with the urologist all happened rather quickly. She came in, went over a brief family history, did some unmentionable poking and pulling, and went right into surgery details. It was crazy how quickly it all transpired.

I was fuming with anger because the urologist asked us why we had waited so long, if we were too busy doing other things--as if there were other things more important than my kid's health. And, of course, I was thinking it was all that damn pediatrician's fault, with his wait-and-see game. The game he so commonly likes to play with my kid. I had mentioned the problem to him several times, only to have my concerns quickly dismissed. The urologist said that if the problem was going to self-correct, it would have happened around two months of age, when the body experiences a surge in testosterone. She went on to say that most surgeries are performed before six months of age. And, there we were, at eighteen months of age. My cheeks were firey red, and it took everything in me to bite my tongue, when I really just wanted to call the pediatrician and give him a piece of my mind.

But, we pressed forward with the details of the surgery. She was speaking so fast, and my brain was still busy cursing the pediatrician, so I was only catching pieces of what she was saying. Will be scheduled in six weeks time. Outpatient. St. Mary's Children's Hospital. General anesthesia. Two incisions. Codeine. Three weeks recovery. Risk of serious complications... She was singing an all-too-familiar tune--one that was piercing my ears and breaking my heart.

And, for those of you who are now backtracking and counting six weeks time--yes, that is just in time for Christmas. Joy to the world...

But, as the urologist was spitting out her as-a-matter-of-fact procedure routines, I quickly jumped in with my familiar tune of questions and concerns--now being a seasoned pro of both anesthesia and surgery procedures. The urologist was very knowledgable and calming, and, yet, nothing could calm the internal angst I was feeling. At one point, I remember seeing Darrin look away with tear-filled eyes. It was a rare occurrence, which I have only seen him experience a handful of times in this whole process. And, at another point, I was holding my breath and biting my lip in an effort to hold back the emotions screaming inside of me that were wanting so desperately to escape.

But just as quickly as the appointment started, it was over.

And, so, at this point there is nothing else I can do but wait for them to call me with the surgery date. I sort of have to just roll with it. Another one of those "let go and let God" kind of situations.

Please continue your prayers for our precious little boy.

The Next Road Ahead

The past seventeen months have taught me a lot about life and love. I have learned to appreciate Brandt for all that he does and for how hard he has worked to get to where he is. Things that might come natural for others have meant months of therapy, practice, and hard work for Brandt. I have also learned to accept what is and to love Brandt for all that he is. It is too easy to look at other babies younger than Brandt and wish that he could do what they do, but all that negative energy is no good for anyone. I have learned that, though some of the roads less traveled can be scary, no one can fight for my son that way that I can. I can cheer him through life's most memorable moments and calm him through life's never-ending nightmares.

Life is all in what you make of it.

And, though, we have been to hell and back since February, we survived the fight. And, we will continue to fight. That's what we do. We fight, come up for air, and then fight some more. We know no mercy. No battle is too big; no battle too small. We kick ass, take names, and keep pushing onward toward victory. We Battle for Brandt and know no boundaries.

We have spent the past nine months exhausting every effort to provide Brandt with the best possible medical care. He has had 4 MRIs of the complete spine and brain, an EKG and echocardiogram of the heart, over 30 genetic and metabolic blood panels, extensive neurological evaluations, weekly speech and physical therapy sessions, ear tube surgery, multiple hearing tests, asthma/allergy tests.... and you'd think this list would end soon, but it is just beginning.

A couple weeks ago, I mentioned a "congenital birth defect" that needed to be corrected before age 2 (see blog: Scary Secrets). It was hoped that the problem would self-correct during the first six months of life. Unfortunately, that was not the case, and our pediatrician has referred us to a specialist to address this condition.

Part of me is ready to face the problem head-on and just knock it off the list while the other part of me sees another scary road I'll go down alone. Alone. Again. Another tough road. Alone.

And, I'm thinking, it is all a little too overwhelming for me right now. This is bad timing--and I know I can't control when life happens. But with all the stress of a terminally ill family member, it is just not a good time to be dealing with this, too.

In my research, I have found that this congenital defect, depending on severity, can be corrected with either hormone therapy or surgery. And, while I am ready to do whatever I need to do for my son, I fear the road ahead. It's hard not to see the roads we've already been down of appointment after appointment--with cancellation after cancellation for illness--and not see myself heading down those same endless, merciless roads again. I feel so tired, drained, overwhelmed, broken--and I'm hardly treading water.

Yet, I just have to trust that God will be there to guide me down the next road ahead. After all, what choice do I have?!?

Psalm 56:3 , 4 “What time I am afraid, I will trust in thee. In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me

Mommy Extroidinaire

I have been on a homemade toy kick lately, so I thought I would share my latest invention!

As is the movement to eat organic, healthy foods, I used to make Brandt homemade baby foods. I would spend a whole day preparing a wide variety of fresh fruits, vegetables, and lean meats for the month. Then, I would pour the puréed into food storage systems and freeze.

Now, I have 5 sets of storage systems--and finally put one of them to good use! I was able to create a toy to help Brandt with fine motor and cognition.

First, this toy can be used to match the container to the correct color hole--almost like a puzzle. Then, the lids can be opened up for Pom-Pom color-sorting.

It is very useful and simple to make. I basically lined the tray with different colors of construction paper and then lined matching cups. I bought a bag of Pom-poms at Walmart, but I know the dollar store carries then from time to time, too. It is simple and inexpensive but it can offer valuable learning enjoyment!

A Burst of Tears

Today, an otherwise seemingly normal day, changed my world in an instant.

When I got home, I went outside to grab the mail. Great, more medical bills... $100 due to Miami Children's Hospital... What else is new... Another $370 to Martin Memorial... Whatever--I'll call and deal with that later. I then got to a letter from Treasure Coast Early Steps. I sat it aside and then came back to it after I finished with shredding the junk mail and nonsense bills. Finally, I opened it up to find a copy of Brandt's recent speech evaluation, and it shook my foundation to the core. It was all very formal, discussing his expressive and receptive language in terms of mean scores and standard deviations. It was a little overwhelming, and I had to read it through a few times to really grasp what it all meant.

It meant this. The average mean score among his peers was 100 with 85-115 being within normal range. Brandt scored the following:
Auditory comprehension: 69, Age equivalent: 8 months
Expressive Communication: 53, Age equivalent: 4 months
Total language score: 58, Age equivalent: 5 months

Keep in mind, Brandt is 17months old... And scoring as low as a 4 month old infant. It made me so sad. I have never been blind to Brandt's delays, but I never knew it was so bad. Those numbers hit me hard.

Then, the report continues to crumble my foundation. The speech pathologist notated "performance on this assessment indicates a severe receptive and expressive language delay." She also did an oral motor assessment, noting low tone in Brandt's cheeks, a shortened lingual frenulum (tongue-tied), and a slight, heart-shaped tongue tip. Tongue movement or exploration was not observed.

Darrin came home and I read the report to him, and then I fell into his arms crying....

How could this happen? I know, for the most bit, Brandt has been blessed with good health--but how can he have all of these things? Hypotonia in the trunk, feet, and mouth. Motor and speech delays. Anemia. Enlarged liver. Asthma/allergies. Undescended testes. Chronic sinusitis. Nystagmus. A heart murmur... And whatever else I have forgotten or is still to come...

It is just all so overwhelming. First, I wonder what the hell I did to cause this to happen to him. And then I feel like I am not doing enough for him, like I am failing him. It's hard not knowing what lies ahead and how to best help him. And, yet, I watch the gap continue to widen...

And, so, for today, I believe I am entitled to break down and just cry...

Brandt's Everything

Some days, I wish with all of my heart that I could stay home and be Brandt's everything-- his OT, his PT, and his speech pathologist. But, I cannot be everything all the time. I have to trust the people left in charge of his care during the day, and be momma-extraordinaire by night!

When I was trying to help Brandt crawl and walk, I bought everything I could. We have an infant exercise ball, scooter board, 3 ride on toys, 2 stand 'n' play toys, 2 push toys, an exersaucer, and a jumparoo. Anything I could think of, I bought! And I'm sure any parent in my position would do the same. The physical therapist tells me I have too many toys, and friends say I have enough to run a daycare!

So, recently, I have taken a particular interest in Brandt's fine motor. I bought a few toys--such as knob puzzles, stacking cups, blocks, stacking rings, legos, a shape sorter, pound a peg, and a latch board. Still, I wanted more so I took some advice from the OT and made it my own.

I was told to have Brandt put Cheerios in an empty water bottle--but that seemed to lack stimulation. So, I took it a step further.

With the help of a friend, I took an empty 2 liter and cut out a hole at the bottom (to get the stuff out). I lined the edges with red duck tape so no one would get cut or scraped.  Then, to make sure the objects don't go flying out, a piece of blue felt was affixed with brads. I then gave Brandt various-sized glitter pom-poms to drop down the spout.

He absolutely loved it. The good thing about different sizes is that some of the pom-poms went straight down the spout with no problems while he had to use his index finger to push larger ones down. I found that if I just let him grab them, he would shovel them in his hands and rub his hands all over the spout until they eventually fell in. If I used my pincher grasp to give them to him one at a time, he used his pinch grasp and put the Pom-poms in the container with far greater success and precision.

After 20 minutes of putting the glitter Pom-poms in and taking them out, he got upset when I tried to put it away for bedtime. I was so happy, I gave him another ten minutes--and he was mad again when that time was up. I was so happy that he enjoyed it--and it cost me like $3! :)

One suggested--weigh it down. I put a bag of dried beans inside to help with his unsteadiness, but you could use leg weights, bean bags, canned veggies, etc.

Scary Secrets

Bloggers, forgive me for in advance, but this blog is going to be vague. You must be wondering why I would post an entry so vague after my many tell-all posts...truth be told, this blog is more than just a way of sharing with others, but it is also a way for me to express my feelings and unleash my deepest frustrations. Blogging helps to cope and sort through my feelings, and, so, this blog will be just that.

Let me preface with this. Brandt has been sick with the flu for a week, and since I am going on little sleep, I am getting overly analytical and emotional.

This morning, I was sitting on the couch after I put Brandt down for a nap, and all of the sudden this idea pops into my head--a congenital problem noticed at birth. And, the obsessing began...

When Brandt was born and examined, a congenital abnormality was indicated. We were told it was no big deal, and it should correct itself within the first six months of birth. We didn't think anything of it, because is was a common occurrence in babies. And, to be honest, we never really took notice of it. Months pressed on, and we sort of forgot about it.

Then, light was brought back to the matter when we went to the pediatrician for a pre-op physical and health history report. I briefly mentioned it in a past blog but I wasn't comfortable with sharing the intimate details--just a brief reference that "other problems" were indicated. On the report, the doctor had notated this abnormality, without even mentioning it to us during the examination. I didn't even know what it meant--if it was a problem or just a fact--so I mentioned it a couple weeks later when Brandt was back at the pediatrician. The doctor indicated that they like to give the problem time to self-resolve, as it would in most cases. He was so matter-of-a-fact and casual about it that I was not alarmed at all. He stated that if the problem didn't correct by 18 months, it might need to be surgically corrected--but he was confident that would not be the case. He shrugged it off and moved on, and so did we. Once again, we blew it off and forgot about it.

It has been about four months since we spoke to the pediatrician in those regards, so I am not exactly sure why this incredible fear just overtook my body. All of the sudden, I found myself freaking out. Panicking. Heart racing. One hand on my forehead and the other on my keyboard, I combed through page after page, reviewing articles from some of the top children's hospitals in the country. The word was the same--This problem must be corrected by age two or there will be long term effects. Long term effects--he is only 17 months and I have to worry about 20-30 years down the road.

I absolutely cannot believe that I forgot to monitor this issue. How could I forgot to monitor something so important--something that could carry lifetime effects? How could I have been that consumed with all the developmental deficits that I neglected his physical health concerns? Am I that out of touch with reality and my role as a mother? It is shameful.

And it is all just a bit too overwhelming for me. I'm already 10 steps ahead of where I should be. I'm thinking about what if he does have to have surgery? I don't know that I have the strength to see another specialist and do another surgery, and all the appointments that go with it. And how invasive would the procedure be, and what is the recovery like? Would I need to take time off work--my thoughts are just all over the place. And I'm thinking I'm just too drained, exhausted, damaged to go down another dark road. I'm running low on gas--I just can't go down anymore winding roads. I'm too broken for all of this. I'm already overwhelmed, and my fears haven't even been confirmed yet. It's all just too much for me.

And, then, as I continue to comb through the webpages, I wonder, does this somehow tie to everything else? Is this an important detail that I too quickly dismissed and neglected to tell all of his doctors? It this the missing piece that would give way to the picture?

And, once again, I am getting too far ahead of myself. Definitely need to rest and regroup. But, just for the record, he has a well-baby appointment at the end of the month so this problem will have to be addressed head-on then. I just hope I can hold it all together until then.

Exploring New Lands

In light of recent circumstances, I did a little sole-searching in regards to Brandt's care. I talked it over with friends and finally decided to look at my options. My thought was that if nothing else, I would at least feel more confidence with where he is at now.

So I toured Woodlands Montessori School today. It was a very eye-opening experience for me. As I entered the facility, my first thoughts were that it was so inviting and quaint. They had a beautiful display of fall decor that set a warm feeling.

I was immediately greeted by an administrative assistant as I entered the office, and then I watched a short video about the Montessori method, which I was already familiar with from college practicum courses. Following the video, the Director came took me on a tour of the classrooms. I found the classrooms to be very clean, large, and spacious. There was all sorts of room for the children to roam and explore, and there were tons of learning labs to facilitate these endeavors. It was so incredible to see such young children with such independence. The toddlers were doing learning labs (or whatever Montessori calls them) without being directed. And, they were enjoying the learning process. The rooms had 10-15 kids in each, but they were so calm and quiet. The classroom climate was so amazing. Each classroom led to a common courtyard where the children were able to learn and explore at the same time. The children swept a mini bridge and the side walk. They watered the flowers and grew vegetables! It was just so incredible.

Finally we made it into the classroom where Brandt would be. The director told me to put Brandt down so he could explore his new surroudings. Immediately, she picked up on what was my fear--his developmental delay. She asked if he was a new walker, and I told her he had only been walking for a couple weeks and was in physical therapy. I knew I would need to be forth-coming about this because he would need to be at a facility that would allow his physical and speech therapists to come. As I was telling her about this, my heart was racing. This was the one thing that worried me about sending him to another facility. And, as quick as I told her, she replied by telling me she had three other students who were getting specialized services. It was such a huge relief to hear. We watched Brandt explore, which really was him destroying others' work. The Director then gave him a puzzle. Again, I shrieked. Brandt took all the pieces out and threw them across the table. I tried to give them back to him to put them back in, but he was unable. I wasn't surprised that he was unable to do puzzles because I try to work with him on that on the weekends and evenings--with little success. Brandt then left the table and started to walk around the room. And-BAM- his wobbly hips and jello legs lost control, and he tumbled backwards. We both shrieked, and I knew it was going to be a problem. She looked horrified, although I tried to blow it off.

She then took me back to the office and went over some of the procedures and registration. She explained that if we should choose for Brandt to attend there, Brandt would need to be walking more stable and controlled. And, when he was good with that, he could come in for a two-day trial. Based upon how he does with trial would determine if they would allow him admittance into their facility. Woodlands does not accept just anybody, and my gut sort of tells me that Brandt just might be te type of child they try to filter out.

I have a lot of mixed feelings that I am trying to sort through. On one hand, if I had a "normal" child, I would switch to Woodlands in a heartbeat. Without even a second thought. But, I don't. Clearly Brandt is going to need a couple more months of walking before he is steady. And even if he gets steady with his walking, I am then worried that his fine motor delays will be a problem. All those little learning labs that they do are far above him. Even cognitively, I am not sure that he is where they are. In fact, I know he is not. It makes me sad. It truly sucks because no matter how much he is advancing, he is always still behind.

Immediately after leaving there, I thought maybe I would try to transition him at Christmas break. But, then, I know that they do not accept just anyone. Who else would they try to filter out besides special needs kids--I just know that is who they are trying to filter out. And, I am not sure that I am ready to watch his delays hold him back; I am not sure that I am ready to cope with rejection.

But, for now, Brandt's current daycare offers him the freedom to be a baby and just play. It is not targetted towards independence and learning, but it might be a more relaxed environment for him. His current daycare gets a little chaotic but that's just kids being kids. It is much more colorful than a Montessori school, and I see a lot more kids smiling!

But, in any event, today was an interesting day. It was very "interesting" to tour some new lands that is Woodlands.

Words Can't Describe

Today has been an exhausting and draining day. Words can only begin to describe my day, but words cannot hit the deep depths of numbness I am feeling.

This morning  while I was busy reading and teaching, I missed a very important phone call--Brandt's daycare. Because my phone is always on silent at work, they called Darrin. Darrin texted me "Brandt got hurt. Going to ER." Reading these terrifying words immediately sent my heart racing and my head spinning. I immediately tried to call him back but no answer. Panic swept over me. Not knowing what to do or what had happened, I then called the director of Brandt's daycare, who informed me that Brandt was trying to walk and fell back in a shelf and bumped his head. She said he had some swelling and a bruise on the back of his head and neck, and she had advised Darrin to have him looked at.

Other colleagues offer to take my class, but with Darrin not answering there was nothing I could do. I did not know what hospital he was at, or the severity of what was going on. And, I was in shock and unsure of how to react, or if there was a reaction warranted.

All I knew was that one of my biggest fears was realized--I always fear Brandt getting hurt at school. At home, I am constantly next to him. I know he is bold, and he often tries to do more than he is able, so I stay within close proximity and block off potential hazards. And, not meaning to offend anyone, I really do not trust anyone with Brandt--mommy knows and takes car of him best.

As I had a scheduled meeting with the "big dogs" to attend right after I got off the phone with the daycare, an hour had past before I heard from Darrin. Finally Darrin called me back with an update. He reported a minor contusion to the back of the head, but said Brandt should be okay-- just needed to watch him extra closely. The nurse iced Brandt's head and sent him on his way. Disaster averted, this time.

But my day did not end there, oh no...

The one thing that scares me the most with Brandt (other than him getting seriously injured at school) is the uncertainty of the future. I often wonder if Brandt will just eventually catch up, or if he'll always be about 6 months behind his peers. Or, will the gap continue to widen? Will he need continued services once he's in school, and if he does, will those services be available to him? It is a dark road of uncertainty ahead, so I try to not look too far ahead. Still, there are times when I can't help but wonder.

There are times when family, friends, and associates with special needs children--who are much older than Brandt--go through the day to day struggles. And, when I see their struggles, I feel their struggles. I see the road they are traveking down, and I see our pathway ahead. Their heart aches for their child, and my heart aches. They cry out of fear, and I cry alongside them. And, somewhere in the midst of emotions, we feel it all together and try to help each other through.

And, with all that was going on in my personal life today, today was just not the day for me to feel for others. Not emotionally. My already-aching heart was so full of personal angst that I was too vulnerable. and, yet, life is not about a perfectly planned emotional pitfall. So, as I sat alongside a crying mother discussing her fears for her child, I found tears slowly slipping away, too. It was a whirlwind of indescribable emotions and feelings. I felt for her and her son, me and my son, and all parents going through the process. I wanted to jump up and hug her; I wanted to run away and cry. I wanted to tell her the untold secrets and answers, but there are no answers--or, of there are, I am still looking for them myself.

And, so, internal strength took over. My emotionless body let the puppet strings lead the way and somehow God helped me to finish the day with a smile on my face. But, now that the day is all said and done, I retire back to the emotionless state that started my day. I hang my head and say a prayer for a long night of good rest.

Time to Rebuild

I saw this on a friend's Facebook page, and I thought there was no other way I could say it better:

"A little boy asked his mother, "Why are you crying?" "Because I'm a woman," she told him. "I don't understand," he said. His Mom just hugged him and said, "And you never will." Later the little boy asked his father, "Why does mother seem to cry for no reason?" "All women cry for no reason," was all his dad could say. The little boy grew up and became a man, still wondering why women cry. Finally he put in a call to God. When God got on the phone, he asked, "God, why do women cry so easily?" God said, "When I made the woman she had to be special. I made her shoulders strong enough to carry the weight of the world, yet gentle enough to give comfort. I gave her an inner strength to endure childbirth and the rejection that many times comes from her children. I gave her a hardness that allows her to keep going when everyone else gives up, and take care of her family through sickness and fatigue without complaining. I gave her the sensitivity to love her children under any and all circumstances, even when her child has hurt her very badly. I gave her strength to carry her husband through his faults and fashioned her from his rib to protect his heart. I gave her wisdom to know that a good husband never hurts his wife, but sometimes tests her strengths and her resolve to stand beside him unfalteringly. And finally, I gave her a tear to shed. This is hers exclusively to use whenever it is needed." "You see my son," said God, "the beauty of a woman is not in the clothes she wears, the figure that she carries, or the way she combs her hair. The beauty of a woman must be seen in her eyes, because that is the doorway to her heart - the place where love resides." "

Reading this post nearly reduced me to tears, hanging onto and feeling every word and every emotion that goes into being a woman, a mother, and a wife.

Our little family has been through a lot over the past 16 months. We have had many highs and lows and things have not always been easy. Yet, we have always managed to press forward. There were points where I felt like I was carrying the weight of the world alone, and points where Darrin and I would go days without anything nice to say to each other. And, yet, despite our differences, we have been each other's best ally. But, perhaps, in the 16 months of Battling for Brandt, we found ourselves a little lost and distant. Perhaps, some of the words spoken should have went unsaid. Perhaps, it is time to move forward and focus on more of the highs and start re-building the bond that brought us together. Perhaps it is time to start over new. I just hope that we both have it in us to do it together...



Sent from my BlackBerry®

Some Food for Thought

So, today has been a day of food for thought.

First off, Brandt's therapy. Because the life of a teacher is so busy, the physical therapist does sessions with him at the daycare. Every once in a while, she will come over to the house on a Saturday, but that is a rare occasion. In order for us to have good communication, she writes notes after each session in a small journal that travels in Brandt's lunchbox. Today, as I was reading the notes, I thought: "I wonder what people would think if I would've blogged the therapist's notes from each session? Would they feel sorry for him the way that I do?" It was a momentary lapse of thought to think that, but sometimes the notes are just a little hard to swallow. As I read the journal, she indicated Brandt's desire to want to walk like the rest of the toddlers in his class, and she, time and time again, has indicated how unhappy he is that he can't do some of things that others can do. It makes me sad. That is just one of those things that you don't want to hear. You never want your kid to be or feel less than their peers. Then, she continues to go over their therapy session, indicating the use of a Posterior Walker. A posterior walker is a metal-framed walker that opens in the front to allow him to walk freely while making him control his body more from falling forward. She said that he was able to maneuver around, but that his trunk was very wobbly. And, even though I know that this devise is used as a tool to help him strength, I hate hearing that he has to use a walker. It's just not a joyous thing.

And, then, to make a great day even better. I was looking at symptoms of Autism (not for Brandt) when I came across M-CHAT (Modified Checklist for Autism in Toddlers. I thought, no way Brandt is autistic, but then I thought, well, let me just see (thinking it would give me reassurance). As I was answering the questions, I was thinking "yes, he is doing so much better than I expected, thank goodness, he can do that, he does that, oh good...." I got to the 23rd and final question, I felt relief and pride in my answers. I hit submit... and then reality made me sink. It stated: "this score indicates that your toddler may be at elevated risk for a developmental disorder such as autism." It was like a huge slap in the face--I seriously thought he had done so well. How could this be? But, to be honest, I do not accept this, and I am not going to "seek further medical evaluation" because I think that this survey is a crock of #$&!^%$%. But, it was interesting to say the least. Just a little food for thought in the future, but certainly nothing I am going to be following through with at this time.

With all of this food for thought, we shall never starve!

Another Day in the Life

Today was another trip down to Miami Children's Hospital. I was dreading the trip so badly because it is such a long drive--3 hours--just to check Brandt's ear tubes and do some blood work. I had some genetic labwork ordered back in July that no local diagnostic center or hospital would do, so Miami Children's was my only way of getting it done. I felt like such a bad mom that I had held on to it so long, which made today's trip a bit of a relief.

Because I needed an appointment on a non-school day, I ended up with an appointment at 8:30am. Factor in a three hour drive, needing to stop for gas, and hitting Miami just in time for rush hour traffic, we decided to leave at 5:15am. Luckily, God was on our side and we ended up in Miami at 7:30.

Out first thought was that maybe no one would be in Patient Access for labwork yet since most of the doctor's offices weren't open for the day yet. We thought one hour should be perfect to get in and get out. It was too perfect that we were there with the perfect amount of time to get the labs done before Brandt's ENT appointment. So, we checked in with security and went straight over to Paetient Access. We opened the doors and the room was filled. We thought surely all of these people weren't there for labwork, as this was also the waiting room for surgical and imaging procedures. We checked in and waited for registration to call us. 30 minutes later, we were finally called for registration. With time running out, I asked how long the expected wait time was, and she informed me that there were still six people in front of us. So, we sat and waited but time was not on our side. Finally, we told the receptionist that we had to leave for our appointment and would come back.

The appointment with the ENT was just a standard check-up. Not much to say, other than he told me to get rid of the pacifier--which he's been telling me for a long time, and I don't see him going without a pacifier at night for a long time. He also said for my husband to stop cranking the A/C down to 72, as this makes the nose run more and the adenoids enlarge and are not able to properly filter. So, that's a relief for me because I freeze at night. Return in 3 months--oh joy...

So we went back to Patient Access and informed them that we had returned, so they bumped us to the front of the line since they had already called us when we were out, which I thought was so fabulous of them. The lady grabbed our file and was gone for about fifteen minutes preparing before finally returning to get us. As I followed her down the hall, I realized that she was a familiar face. She was the same lady who had done our genetic labwork in the past--which wasn't the best of memories for me to recount to her. Still, as we walked in the room, she said that she remembered doing Brandt's blood work before--without me even saying anything to her! I was blown away--what the heck was it that made us so memorable for her over the thousands of people she had seen in the past six months?!?! She continued to recount that she remembered the difficult time she had finding his vein and that she remembered three other nurses having to come in and hold him down. She remembered that we had a very specialized genetic lab order, and she was spot-on in her memories, but I could not help but wonder if there was something else that happened during that visit that made her remember us. Guess I'll have to go back and check that blog for any indication (Blog: Welcome to Miami, Bienvenido a Miami)!

I will say that this time, she did get his vein on the first try--thank goodness. However, it is good that I am so aware of Brandt's testing because as I was counting the ten tubes she had pulled out, I questioned why so many for only the two things that were being tested . She showed me the orders, and I told her that it was only supposed to be the two highlighted, as I had indicated to registration, because we had already done the rest at a local lab. Glad I caught that--poor baby just gave five tubes on Saturday for liver function tests. After catching that mix-up, he did four tubes today. And I know he has a follow-up labwork to retest for the effectiveness of his prevnor vaccine coming up again pretty soon.

All was done by 10am, and we hit the long road home. Thankfully, we were back home before 1pm, which gave me time to be a mom. I love it when I have time to just play and laugh and do whatever else without having to worry about doctors or medicine or breathing treatments. We had such a blast, and it was so nice to really see how much he is learning and strengthening. He is walking across the room now (although, a lot of wobbling), and he can even stand up without pulling up (sometimes). He plays patty cake and pats his hand over his mouth (like he's making little Indian calls)! I love my little munchkin!

Confusing Answers

Dear Faithful Followers;

It has been a crazy ride over the past eight months as we have searched for answers for our son, Brandt. But, here, you've joined us, patiently waiting for the roller coaster ride to end all roller coaster rides--Brandt's MRIs. The results are in, so hop aboard, and join in this terrifying thrill ride. But, buckle up because there are many crazy turns ahead--brace yourselves!

First off, let me give all parents going through similar testing two tips.
1.) Your doctor will schedule a follow up visit a few days after any procedure to go over results. What they will not tell you, however, is that you don't have to wait for them to get your results. You can obtain your own copy of the results within twenty-four hours of being completed. Go to the records department of the testing facility. You (and your insurance company) paid for the testing so the facility is required to supply you with any and all results.
2.) Do not try to interpret the results or drive yourself crazy researching on the Internet. You are not a doctor, and you will only make yourself more concerned! Call the ordering doctor if you have results stating any abnormalities. If you tell them you are aware that the testing indicated abnormalities, they can explain the results to you over the phone.

That being said: keep your arms, hands, and feet in the cart at all times and enjoy the ride!

The day after testing was complete, Darrin went over to St. Mary's Hospital to obtain a copy of the radiologist's report. The findings of the MRI immediately sent Darrin into a whirlwind of emotions. Although much of the report is in scientific gibberish, there is no misunderstanding what "abnormality" means. He immediately went to the Internet to find answers to what the terms meant, and then he called me. Darrin quickly reported the results. He voice was loud, and his speaking rate was increased. He studdered as he uttered out that the MRIs showed two collapsed lungs and an enlarged liver.

I was just about to pick my students from PE when I got his call, yet I could barely stand. As the kids shuffled out, everything around me began to spin. I could barely breath, couldn't speak, couldn't move. My eyes met another teachers, and I know she instantly knew what I was thinking and feeling. A student called my name, and I took a deep breath and snapped back into teacher mode. But, how could I be in teacher mode when my mommy-heart was bleeding? Another slow, deep breath. I put on my game face and pressed on as best as I could.

Finally, I got a brake and called the neurologist. The nurse triage said she'd forward the results to the doctor and have him call me back. Hours went by and I heard nothing.

In the meantime, Darrin, who had also spoken with the neurologist's office, faxed over the results to the pediatrician's office. The pediatrician called back to go over the findings. He said the lungs were typical because of anesthesia. And, he believed that the liver enlargement could be caused by the iron supplement that Brandt had been taking for his anemia over the past five months. The pediatrician said he'd like to feel Brandt's abdomen for abnormalities in the liver. So Darrin scheduled an appointment for Thursday.

After not hearing from the neurologist for hours, I called back but nurse triage was unavailable so I left a voicemail. Five o'clock came and went, and I decided that I wouldn't be hearing from the neurologist until Monday as the weekend was already upon us. I'm not going to lie--I was mad about that.

Darrin came home at 7:15 and handed me a copy of the report. No sooner did I finish reading the medical jargon then I got a call from a private number. It was the neurologist. Freaking finally! He started by asking me who told me that Brandt had collapsed lungs----Darrin. He asked where Darrin got that from, which clearly was from him researching the medical term from the report and adding his own interpretation of what he read. The doctor said the term Darrin was referring to (moderate atelectasis noted in both posterior lungs) simply means the lungs were not fully inflated, which is due to the anesthesia (confirming what the pediatrician said). The next part of the report says "liver looks mildly enlarged. Mild hepatomegaly may be present. Clinical correlation is suggested." The neurologist did not know where to go with this, as it was beyond his specialty. I explained to him that the geneticist ordered an abdominal ultrasound with attention to the liver a few months ago, but we had never had it done. (That was one of tests Darrin asked me to surrender.) The neurologist said he would consult the geneticist about the results and get back to me. He said he knew glycogen storage disease would affect the liver and that might be what the geneticist was looking for, but then he continued to explain that MRIs really aren't the best tool for measuring the liver anyway. He said it could be something, or it could be nothing. --Great, that really helps. Sigh.

But, since this roller coasted ride might be getting ready for a second round, I will end this on a happy note--the spine was dictated as "no significant abnormalities of the entire spine." Every ride must have a happy ending, if nothing else, then to get off the darn thing! Until next time thrill seekers!

Finally Behind Us--MRIs Done!

Thursday marked the end of a long line of frustration for our little family. After  five months of failed attempts at Brandt's MRIs, the procedure was successfully completed.

Because all of the marital strife and internal confusion, I did not tell my husband about the MRIs until 2 days before. Because last time Darrin just created more stress, I suggested that he consider staying home from the appointment. He agreed, and my mom quickly stepped up to fill in as my support system.

This time around, things went much more smoothly. There was no one to bump our table time , and no nasal drip to stop the MRIs midpoint. 

It was scary and completely different from before in that they would not permit me to stay in the imaging room with him since general anesthesia had to be administered. They did, however, allow me to carry him into the imaging room and to hold his hand while he was being put under. Gone was the day of peaceful oral sedation where he somberly fell asleep in my arms. This time was not that. It was not a peaceful moment; it was pure hell. Brandt was restrained and screaming from fear as they held the mask firmly over his face. And then he was out. They took the mask off his face and let me kiss him goodbye. His face was red and sweaty from the frustration of going down. My heart sank as I gave him a kiss and left the room.

Although I desperately wanted to stay glued to his side, it was far easier to wait in the cafeteria. Last time my eyes were fixed on the vitals monitor, my blood pressure was surging, and I jumped every time I heard a mysterious noise. Sipping a coke and poking at my yogurt while engaging in small talk kept me mindless of the happenings.

Two hours later, I was called into the recovery room. Brandt was still sleeping, but they wanted me to be there to comfort him when he awoke. It was not long after I sat down that he awoke. He was a little irritable and disoriented, but he seemed to be more peaceful than he was waking up from his ear tubes surgery at Miami Children's Hospital. He was really just frustrated about all of the cords, monitors, and IV that covered his body. Oh, and the fact that he was hungry.  He drank a cup of juice and quickly cheered up.

We were then reunited with my mom and moved to Phase II. There, they took his vitals and gave him another drink. Since he was eagerly taking down fluids, we were quickly given discharge instructions and sent on our way.

They warned me that Brandt would probably be groggy and want to sleep, but he was nothing of the such. They warned me that he would be uncoordinated, but he had more controlled movements than ever before. He was taking several steps unassisted and even getting to a standing position without having to pull up on things. It was one of the happiest moments of my life!

And so the waiting begins... Stay tuned for the results....

Just Want to do Right

In going into this adventure with Brandt, all I have ever wanted to do is just do what is right for him. Doing what is right has not as come easy.

Each doctor visit and procedure has come at a price.s first comes the marital strife it has caused because of four polar opposite opinions. then comes the dangers associated with each procedure. Believe Me, I make myself crazy weighing all of the pros and cons.

Brandt is scheduled for three MRIs of the spine today. Because we have attempted this procedure Nero and went through utter hell in the process, I have been having a hard time deciding if I really awaited to put Brandt through it again.

first of all, it is a draining day--both mentally and physically. The whole day with pre-op, the procedure, and recovery takes around 7 hours. That's 7 hrs of me rocking him, pacing up and down the hall with him, playing with anything we can find, and trying to keep him content when he is starving.

Last time, Brandt's respiration wasn't so good, and they only had him on a mild oral sedation. this time, they said he has to be under full general anesthesia because of his post nasal drip, which brings a whole other concern he'll be under for around 3 hrs, and he doesn't ever wake up too happy from sedatives.

Darrin had suggested that we wait three months and see if he is walking then, which would make Brandt 19months old. Although I never told me, I heavily considered it. The idea of having to do MRIs again at the hospital of hell was none too appealing for me, and I certainly  did not want to put Brandt under unnecessary risks. He is my world, and I hate ruining his. So, I tossed up the idea of waiting, and at one point that is what I had decided to do.

Still, the idea of something being wrong with Brandt and going undetected did not sit well with my mommy gut, so yesterday I decided to go forward with the MRIs. Even if he does walk in 3 months, that does not mean that he doesn't have a tethered cord or the more mild form of spina bifida--and I have a family history of spina bifida. So, while Darrin's idea of waiting was good in theory, Brandt walking wouldn't cancel out the possibility of having a spinal abnormality. and, if I as. Mother was the reason something went undetected, I would feel horrible. So, today 8 have to put on my big girl panties and be strong for my son.

The fact of the matter is, Brandt is 16months old, and just took his first three steps yesterday (before he tumpled down to the floor on his face!). There has to be something that is causing this delay. Clearly you can see I have a scientific line of thought. I would like to believe that his fat butt is just too heavy for him to balance yet, but I just don't know.

So, time to go pull out those big girl panties and get this day done with.

Denied and Speechless

This is just one day where I am absolutely speechless, so I am going to cut through all of the bull and straight to the facts.

I received a letter from my private insurance company in regards to Brandt. It read something like this:

"Dear Brandt Forman:
Blah, blah, blah... in the matter of request for coverage of speech and hearing therapy services, your request has been denied... blah, blah, blah... services not covered... blah, blah, blah... an underlying medical condition or injury must be diagnosed...blah, blah, blah... speech therapy for developmental delay is not covered... appeals process... blah, blah, freaking blah...
Sincerely, Cigna POS"

I find it funny that they will spend tens of thousands of dollars on genetic and neurological testing, but they won't authorize speech twice a month. That is pretty messed up.

I can't take two steps forward without being pushed five steps back.

Luckily, I have a level-headed and fully-educated friend to bounce ideas off of. She suggested I push for a diagnosis--even if I don't agree with it. Getting a diagnosis of "autism" would not make Brandt any less abled, but it would enable him to receive speech and hearing therapy services. Or, even if the pediatrician can give him some type of general medical diagnosis that is not otherwise specified, that might be enough to get him services. It is just so frustrating the hoops we have to jump through to get anywhere.

On a happier note, I am super-happy to have such great family and friends that I can bounce ideas off of and talk things through with when things get overwhelming. I am thankful to have met such helpful people who have directed my to all the right people who are "in the know." My emotions are all over the place these days, so it is nice to have such incredible people to keep me grounded!