It Never Ends

It has been a long 24hours to say the least. Yesterday afternoon, we drove down to Miami in preparation for Brandt's early morning ear tube surgery.

Staying in a hotel with a baby is never fun. We tried to keep him up and off of the dirty carpet as much as possible, but there is only so much you can do in a hotel room. To kill time and keep Brandt awake, we went to Cheesecake Factory for dinner. Most of the meal, I was holding, feeding, entertaining Brandt--in a desperate effort to keep him quiet. I was exhausted and sure glad when we finally left. We went back to the hotel and got everyone showered. When I finally tried to put Brandt down for the night, he was not having it. I ended up having to spend a good 45minutes rocking him. And then, about 10 minutes after I put him down, the front desk called to see if we needed anything--which, of course, woke Brandt up. I got to spend the next 2hours trying to get him back to sleep. Once he was finally down, I couldn't sleep because my head was pounding. And, before I knew it, it was 4:30, and time to wake Brandt up for his final drink.

We arrived at the hospital around 5:30am, and we managed to register before Patient Access began filling up around 6am. Our scheduled arrival time was 6:30, but we didn't get to pre-op until after 8am. Keeping a hungry baby distracted was quite a feat, but Darrin and I took turns passing Brandt off. We sat, stood, rocked, bounced, watched and played--how's that for "maintaining a lively pace?!?!"

Once we were in pre-op, it was another hour of juggling Brandt. Several nurses, as well as the anesthesiologist, came by to examine Brandt. We discussed his anemia and reviewed his most recent hemoglobin levels. They listened to his heart murmur and reviewed his recent echocardiogram. They heard his cough, and listened to his lungs.

Finally, we got the operation clearance. A nurse brought in some "baby valium" to help calm him down--and it definitely did. Within 15 minutes, he was drunk--wobbling and laughing, eyes drooping and glazed over. He was on cloud-nine!

And then came the hard part--the nurses came in and wheeled him away. Nothing can describe that feeling of sitting and not knowing, watching the minutes slowly pass by.

Finally, we met with the doctor, and then we were taken back to see Brandt. He was irritable and groggy, but he was doing well.

As we were taken to recovery, the attending nurse brought light to an already-forgotten condition--Brandt's heart. He mentioned the murmur, and then he told us that there was more. When Brandt cried before they put him down, the blood shunted away from his heart and he'd turn bluish.

I was taken back when they told me. How could that be possible? Why would the echocardiogram not show that? And what does that even mean? Is it something serious, or does it just need to be managed or watched closely?

So, in a couple of weeks when we go for a post-op with the ENT, we will be seeing a cardiologist, too. I guess I should at least be thankful that I have the summer to get all of these things taken care of.

Good grief, though! It just seems like the medical mess never ends...
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Shaken Faith

Today started out as any other day. Brandt woke up, ate breakfast, had his nebulizer, and took his vitamins, iron medication, and antibiotic. I played with him for a bit, and around 8:30 I took him to school.

Today's physical therapy was scheduled at his school. It was a way for his therapist to work with Brandt and see his new classroom setup--which I have mixed feelings about. Towards the end of the therapy session, I drove to Brandt's school to meet with the therapist and get her opinion and recommendations. Boy, I didn't realize what a can of worms I was opening...

The therapist told me that she showed Brandt's teachers more techniques they could do with him, and she asked them what they had been doing to help Brandt. The teachers later told me that they were offended by the therapist being so presumptuous, so hopefully we can all find a way to work together to help Brandt.

Then, the therapist gave me her recommendations on devices that would better help Brandt learn to crawl and walk. She recommended I consider purchasing walking wings and a scooter board. She also said that she would bring in a gait trainer to work with him on, stating that it was too expensive for me to personally buy.

I quickly drove home and got right on the computer; I went right to shopping! I read and researched all about "walking wings" and other similar walking assistants. Walking Wings is a harness that the parent can use to hold the child upright and balanced while the child concentrates on strength and movement. I also searched website after website for different types of scooter boards. The idea behind the scooter board is to put it under his belly while he is crawling to get him used to his belly off the ground, and I know he needs more help with that. So, finally, three hours later, I purchased both--with two-day shipping.

Next, I decided I wasn't going to let money stand in my way (even if I have to spend months paying it off). I googled "gait trainers." Price was steep but fair--between $500-600. Whatever, cost doesn't matter when it comes to my son's development. But, then I look at the picture--it's a damn walker. And I don't mean a cutesy walker you'd buy from a baby supply store. I mean a shiny metal one you'd buy from a medical supply store. I was shocked, annoyed, offended--why would she recommend that for my son? He doesn't need that; no way he is that bad off. What was she trying to tell me? Am I really ready for whatever lies ahead? My faith was shaken once more.

After getting Brandt home from school, I heard to worst sound I could hear--Brandt was coughing. I was hoping (pleading with God, really) that it was just allergies. I gave him some Zyrtek, and my husband gave him some more Albuterol and Pulmicort. As the evening progressed, so did the productiveness of his cough.

Could it be--could he really be sick again? Is the weekend in isolation going to be enough time for his body to stop and recover? Is he really going to miss yet another attempt at tubing his ears? Still on an antibiotic, how could he get sick again?
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Summer Skills

So, during each break throughout the school year, I made a goal or two for Brandt. We worked really hard and stayed vigilant, and we mastered the skills!

So, now that I am home for the summer, I have decided that I should lay out some goals. With these goals, we will work on a variety of occupational, motor, and communication skills. Each of the skills I have selected he should've mastered before his 1st birthday, so I'm hoping this extra time with him will help him catch up some. I invite you all to join us on the journey!

1.)  Drink from a straw.
2.)  Self-Feed with a Spoon.
3.)  Bang Two Blocks together.
4.)  Stacks Blocks or Cups.
5.)  Waves Bye-bye.
6.)  Say "Mama" to Correct Parent.
7.)  Imitates Sounds.
8.)  Crawl with Belly off the Ground.
9.)  Walk with a Push-Toy without Assistance.
10.) Stand Unassisted for a Couple Seconds.

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Sick Again!

Bloggers and Followers--please forgive me to the delay, but it has been a crazy couple of weeks...

Last Monday, on the day that we took Brandt for that consultation with an ENT in Miami, Brandt came down with a fever.

By Tuesday evening, we took him to the pediatrician with a fever of 102.3. He was irritable, restless, and dehydrated--refusing foods and fluids. The nurse swabbed him for the flu and strep. As we waited for the results, Brandt's fever rose past 104. The doctor instructed him to be wrapped up in ice. I dreaded the idea because I knew the ice was going to make him more uncomfortable and irritable. But, as I wrapped the bag of ice around him, he stopped crying and fell asleep on my chest--he was comfortable and content. Finally, both swabs came back--negative. Still, they treated him for both since he had a red, puss throat and recent exposure to the flu. The ice wrap brought his fever back down, and we were sent on our way.

His fever continued to rise again Tuesday night and Wednesday morning--all the way up to 105.7. We wrapped him in ice, gave him Advil, and were preparing to take him to the ER before the fever finally broke. Thursday he finally started taking down adequate fluids again, and by Friday he was getting good sleep on his own. Saturday, his spirits started to rise, but then he broke out in hives. His whole belly was covered in a rash--no fever, no new foods, no new soaps. Darrin called the nurse line and answered question after question before it was finally decided that he had roseola, a common viral infection that most kids get before two-years-old.

Brandt being sick again could only mean one thing--no MRIs for last Thursday. So, of course I called St. Marys to reschedule AGAIN. The next available appointment isn't for another six weeks. I tried Miami Children's, but they're availability was just as bad, so I guess we'll wait the six weeks and pray like hell that he does not get sick then!
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Back to the Drawing Board

Yesterday, we were up at 5am and out the door by 6--back on the long road down to Miami Children's Hospital.

The purpose of this visit to MCH was to get a new Otalaryngologist since our local ENT did not feel comfortable with doing Brandt's tubes.

It was a long drive, with my mind going a million miles a minute. Would this ENT be able to do the surgery? What is the cause of his anemia? What were the results of his echocardiogram? And, would the results lead us down another road of specialists. I was going crazy, and Miami-Dade traffic was making me feel claustrophobic.

When we finally arrived at MCH, the ENT took us back right away with no BS nurse asking us a hundred questions. Right away, the doctor gave him a physical exam and sent us off for tests. First, we went to do a pressure test, which found fluid in both ears. Then, since our local ENT would not release his hearing test results, we went over to audiology for another hearing test. They performed two separate tests, and both found that his hearing is fine.

While we were waiting on tests, Darrin was on the phone chasing down doctors. He got a hold of the pediatrician, and they faxed MCH the results from the echo.

After all the testing was done, the ENT was closed for lunch so we went to the cafeteria. While they offer a wide-variety of inexpensive meals, I will say a person could starve at MCH!

Once we finally got back into the ENTs office, the lobby was flooded with patients. Finally we were called back. The doctor reviewed the results from all of his test, and then he grabbed the echo results--I think our hearts skipped a beat from the suspense and worry. And then the words fell from his lips: Normal functioning heart. It was a moment of utter relief. Life had finally dealt us a break.

The ENT then said he would do the surgery. We went to scheduling and they set us up with their soonest appointment, two weeks out.

And so, it was back on the road to go home.

While we were in Miami, we noticed Brandt had a fever, and we gave him some Tylenol a couple times. When we got home, his fever was going strong so we switched to Advil. During the night, his fever got worse and he was restless and irritable. We finally took him to the doctor's today, but by then his fever was soaring past 104. They gave him some more Advilan stripped him down, and wrapped a bag of ice around him until he was down to 102. They sent us out the door with a prescription for an antibiotic and tamiflu.

And so, all of this can only mean one thing--no MRIs on Thursday and no tubes in two weeks. He can't be sedated with an infection, and he can't have surgery within two weeks of taking ibuprofen. So, I guess tomorrow I'll be back on the phone scheduling appointments. It's just hard when they schedule so far out and he's always sick. But, back to the drawing board we go...
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Roller Coaster Continues

Today was not an easy day for me. There was a point when I truly thought I was ready to snap, but I took a few deep breaths and pressed on.

First off, today marked the last day of school, and it did not end like anything I would have ever hoped. I spent the morning packing and moving with the kids. And, since Brandt had an echocardiogram today, I had to leave early. Before I knew it, it was time to leave and I was rushing the kids out the door. I didn't even think to tell them I would miss them or give them a hug--my mind was already at the hospital--and I feel awful for that.

During my packing today, I received a call from Brandt's neurologist. He said that he would not medically clear Brandt for surgery until his MRIs were done and until we came back for results where he could examine Brandt.

I was shocked and confused--how was it safer for Brandt to have general anesthesia for 4 MRIs as compared to mild sedation for tubes? Was St. Mary's going to cancel our 2nd attempt at the MRIs? Am I ever going to get any of these appointments behind us? After I voiced my concerns to the neurologist's office, they called over to St. Mary's. St. Mary's said they would need a cardio clearance before they would touch him. I was so frustrated, but they did say that if Brandt's echocardiogram from today came back fine, then he would be good to go.

When I picked up Brandt from school, I stopped to chat with the director. Two weeks ago when I talked to her, she told me that they would begin transitioning him into the toddler room, and then next week her would be in there full time. He did a couple half days in the toddler room with good reports, but this week he hadn't been in there at all. As far as I knew of, everything was going fine. When I talked to the director today, she told me that she didn't think he was developmentally ready yet. She listed her reasons, and I totally get it--but I'm irritated with their lack of communication. She should've told me when they decided to stop the transition. I'm so worried that he won't be able to stay there for much longer--like, they will tell me they can't meet his needs or something along those lines. But, I didn't have time to really get into timelines and goals with her today.

It was onward to the hospital. So, the echocardiogram wasn't all to fun. Mind you, it was non-invassive. They basically did an ultrasound of the heart. Still, Brandt was not having it. He screamed and cried for the full 30 minutes. I tried to sing to him, rub his forehead, and offered him a blanky. The nurse downloaded an episode of Spongebob to try and calm him but that only worked for like half a minute. He was so inconsolable.

After the appointment, I called my husband, but he didn't make my day any better. He was going on and on about how the MRIs are so dangerous and how he doesn't want to do them, about how I just do whatever in the world the doctor says, about how I am putting Brnadt under unnecessary risks.

I'm at a point where I've just given up trying to get along with my husband, or see eye to eye. I've lost the patience to listen to his opinions. I'm at a point that I just don't care how he feels because I'm going to do anything and everything that my son needs. I wish that he would trust me better with Brandt's care. I might be thorough, but I'm also offering Brandt the best level of care.

I told my husband that I don't want him coming with me to anymore appointments, and I mean it. I am so tired of listening to him fight Brandt's health care. He goes to appointments on his own and doesn't even have a clue. He doesn't mean to, but he doubles my stress. Of course, he is not willing to step down. And so the roller coaster continues...
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Today was not an easy day.

Not in the Cards

Today, a few people pulled me aside and tried to explain to me that none of this was my fault. And, although I heard their words and reasoning, what they said didn't even register.

When I started this blog, I promised myself I would go into it with complete openness and honesty. And, though this is a hard thing to talk about, I hope that people will understand it is all a part of our journey...

A month ago when Brandt suddenly started to transition to sit and stand and then went right into cruising, I thought that things were really starting to look up. I thought that Brandt would be fine, and I began to let go. I told story after story of the cute things that Brandt was doing and the ways he was developing. I bragged about him and rushed home from work to spend every minute with him. I was overwhelmed with happiness and love for our little family.

Even more, Darrin and I had began to discuss the possibility of trying to have another baby. And, to be as honest as possible, we had talked about it so much so that I was already taking prenatal vitamins and changing my diet. I spent my evenings reading about 'ways to conceive a girl,' which sounded like a fun experiment and made me so giddy! Come September, we were ready to try.

Now, that idea is the farthest thing from my mind. The roller coaster of this past week has changed everything--the itch is gone. I have no desire to ever have a baby again. It wouldn't be fair of me to divide my attention from Brandt, and it wouldn't be fair for me to do this to another child. And, people can tell me all day long that this wasn't my fault, but that won't change the facts. The facts are that I lost the first baby from multiple birth defects, and now all of these things are going on with Brandt. Clearly, something is wrong with me, and I have to put the health and safety of a child above my own selfish hopes and desires.

I guess some things just aren't in the cards, and I'll have to learn to play with the cards I'm dealt.

And, while some of you reading this may think I need therapy, the only thing I believe that I need is answers.

Blow after Blow

This week has been one bad blow after another, and I am at a point where I don't know how much more I can take. I need a minute to re-group, and I need next week to be better.
With Brandt's surgery for tubes and his MRI coming up, I had to get a copy of his health history report and physical. I picked that up yesterday, and I was blown away by what I read. The report showed that he had hypotonia and anemia--which I already knew. What blew me away, however, was that it also said he had a specific type of functional heart murmur around the left border of his heart. I was absolutely dumbfounded and irate. I knew nothing of this. How could the doctor put this on the report but say nothing to me or my husband about it? Then it continues to say a few other things that I knew nothing about--things that I have no clue as to the health implications, that I might have liked to of been enlightened about by the doctor. Reading the report ruined my anniversary evening, but I tried to move past it and keep focused on the more important things.
Today, I faxed over a copy of the health history report to the ENT, as was required for Brandt to get tubes. The response was less than appealing. Soon after receiving the report, my husband texted me, "You're not going to f*ing believe this..." That was the beginning of the rest of my day. He went on to say that based on Brandt having hypotonia, anemia, and a heart murmur, they would not perform the surgery--the surgery center wouldn't allow it, and the doctor wouldn't perform it.
I was blown away--how can they not do the surgery? His hypotonia is certainly not going to be fixed overnight, and he is already taking a supplement for the anemia. He could go deaf from the repeated, long-term ear infections. His ears need to be fixed sooner than later. How can a doctor simply not do it? And how does his hypotonia even factor in? It just makes no sense to me.
Immediately, I was on the phone with Miami Children's Hospital. I spent half an hour waiting to get through, but I was glad I waited. I talked to the scheduler for their ENT and carefully explained the situation to her. She said she would have to speak with the doctor and call me back. During that time, I faxed her over a copy of Brandt's health history so there would be no surprises. The doctor and anaesthesiologist both reviewed his file and gave him the green light. We have a pre-op scheduled with them next week, and then we will have to go down another day for the actual surgery.
While I was on the phone with Miami, my husband was busy talking to Brandt's pediatrician about the anemia and heart murmur. The pediatrician ordered some additional tests for the anemia, and he ordered an EKG of Brandt's heart. Darrin immediately picked Brandt up from school to do the blood tests for the anemia, which was another five tubes of blood. And, the hospital is supposed to call us with a date and time for the EKG. But, it is just crazy---an EKG? Really? Like, how many more tests can we do on him? How much more can we put him through? And, how much more can they find that is wrong with him?
I feel like I failed him. I feel like I did this to him. I feel like me getting pre-eclampsia and having to be induced was the cause of this. I feel like if I would have just took it easy when I was pregnant--like if I wasn't running all over the place trying to please everyone else--this might have been prevented. It is a tough pill to swallow, but a pill I won't spit out either.
I am so mentally exhausted that I am just not sure how much more I can take. His MRIs are coming up soon, and I am praying with all of my heart that they won't have the same reservations against that procedure, too. It's just been blow after blow after blow, and I am not sure how much more I can take.

Breathe In, Breathe Out

Brandt has been rapidly catching on with transitioning and cruising over the past month, and it has just been such an amazing time for our family. For a minute, Darrin had me convinced.that maybe I was making Brandt's delay out to be more than it was.

Today, I got a dose of reality. Because Brandt's physical therapist usually works with him at his school, she decided to do a weekend visit so she could show us some techniques for home.

She showed me how Brandt's hands are turned inward when he tries to catch himself from a fall, stating that it was a part of his low muscle tone. She said the way he arches his back when he is trying to reach something above him shows muscle weakness in his arms. She discussed the way that he distributes weight on his feet and the way that he moves his legs when he tries to crawl up something shows his muscle weakness in the trunk and legs. She also pointed out that he tends to be more dominate to his left side, and that he lacks focus necessary to complete a skill or activity. It was all very overwhelming to hear--but I refuse to be one of those parents who are in constant denial. I am willing to except what is--no matter how difficult it is to hear--and I will use that as my fuel to keep pushing for him.

The therapist showed me many exercises on the physioball to help with that core control, and she showed me some activities to help promote using both sides of the body.


During the session, she has mentioned wanting to work with Brandt in the infant classroom where he is currently at, rather than the one-year-old classroom. When I told her that the director was planning to move Brandt over to the one-year-old class withing the next few weeks, she said she didn't think that was a good idea. I was baffled, annoyed, frustrated, confused. After I told her I thought it was for the best because it would give him more room to cruise and pull-up, she made no other mention of it. Still, I wonder why she felt that way. And, how could she say that? She only sees him one day per week for an hour--AND she didn't even know that he was cruising and transitioning from different pieces of furntiure while cruising. Who is she to judge what is appropriate when she does not even know the capabilities of my son?

At the end of therapy, she discussed some of the things that she has noticed where he is delayed and where he is excelling. Some things he can do, one might not think he would be able to do. Other things that he should be able to do based on those skills, he can't. With his motor development being so sporadic and inconsistent, she mentioned many times that she thinks his problems are neurological--which really hit hard considering that the geneticist was leaning that way, as well.


We discussed his delays and my frustrations with feeling that not enough is being done for him. Like, if a developmental delay in speech is what originally qualified him for services, then I feel like he should be receiving speech therapy as well. We have seen a lot of growth in his gross motor development since therapy has been in place, but his speech is at a standstill. The physical therapist agreed and said that she was going to push for speech therapy to be added to his "Family Service Plan." Hopefully, a little push is all it will take to get those services in motion.


So, I guess it is good that we were able to meet today for therapy to rebuild me strength to keep fighting. So, after she left, it was a few deep breaths. Breath in and breath out...

Bumps and Bruises

I've always known that a few bumps and bruises was all a part of life and the muscle development process. Still, it is never a good feeling to see your child get hurt.

This has been a bit of a rough week for Brandt with the bumps and bruises. Tuesday, somehow he came home with a rug burn around his forehead and eye. My husband had picked Brandt up from school, and they tried to tell him it was a rash. IT WAS NOT A RASH! It was definitely a rug burn or scrape of some sort. It was white where the skin had been rubbed raw with red inflammation around it. The next day, he had a little scabbing from the scrape. I was extremely disappointed when I said something to his teachers about it, and they continued to insist that it was a rash--even though you could plainly see the scab.

Then, Thursday, Brandt was visiting the toddler room for a bit (which is such a better place for his gross motor development). While attempting to cruise along the bookcases, he took a dive and busted his lip. It was a small cut, and the inside of his mouth looked fine. I reacted much more calmly--considering they gave me an incident report and didn't try to hide it from me.

When we looked at schools for Brandt, we wanted the best and were willing to pay for the best. With that, I expect the best. I expect him to have some bumps and bruises along the way, but I expect them to be more forthcoming with the happenings.

That being said, I hope that this isn't the beginnings of many more constantly incidents to come. His school just remodelled their facilities, and so far he has gotten hurt two out of the three days he has been in the new classroom. I just don't want this to be a pattern where they start thinking he is a liability to them.

Ughhhh... some days are easier than others, but I just try to keep pushing forward with my held held high.....

"The struggles I'm facing,
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it
But these are the moments that
I'm going to remember most yeah
Just got to keep going
And I,
I got to be strong
Just keep pushing on, cause

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb (yeah)"
--Miley Cyrus: "Climb"
http://www.youtube.com/watch?feature=player_embedded&v=NG2zyeVRcbs