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...