One Step Forward, Two Steps Back

I am mad as all heck. I want to scream. In fact, I want to stomp my feet, cross my arms, and scream like a little girl! I can't believe it, and I just can't take the setbacks much longer.

Today, Brandt went to yet another doctor, this time an ear, nose, and throat specialist. Because he has only had one ear infection, I never could have foreseen the results that he gave us... Brandt needs tubes. He has a heavy, honey-like fluid in ears. The doctor says that it is most certainly affecting his hearing, and he will have a hearing test done tomorrow. The doctor said Brandt's sense of hearing right now is probably like being under water. So, following the appointment with the audiologist tomorrow, they will schedule a pre-op appointment--Brandt will have to have his ears tubed. The ENT also continued and said that Brandt's hypotonia is greatly affecting his ability to swallow.

But, if that is not enough to ruin my day, this also means that his MRIs will need to be delayed because he has to have his ears corrected first. Which means more delays. On top of that, we call the neurologist's office, and they have not even sent in a request for authorization of the MRIs yet because they are still waiting on the neurologist to finish writing his formal report--which is ridiculous to me since we were there two weeks ago.

All this waiting and wondering is really starting to get to me. All of these doctors appointments with the pediatrician, pulminologist, neurologist, ENT, audiologist, and therapist are about too much for me to handle. It seems like every time we take one step forward, we get kicked in the butt by reality and fall two steps back.

Sunlight after the Rain

There are so many days when I just feel so down on life; I feel like I was robbed of all the happiness that one should be given. My childhood bared many painful blows that many people would never be able to fathom. When I finally became an adult and gained independence, I thought I would finally be in control of my own life. Clearly, this could not be further from the truth...

When I got pregnant the first time, my husband and I could not keep our excitement in. We told everyone we knew. At nine weeks, we went out and bought a room full of nursery essentials--only to lose the baby six weeks later. When we got pregnant again with Brandt, it wasn't that same kind of excitement as before--it was a constant fear. I told myself that once he was born things would be better--which now I know isn't true either.

Today, was another day of going through the motions. I took Brandt over to a diagnostic center to have SEVEN more blood tests done to test for allergies and immunology. It just seems crazy to me that he has been sick this long--it's been 2 months straight. Hopefully these labs will give us some insight.

BUT!!!! Just when I was down on life and drained, my baby boy made a major development. While the typical parent would not be as excited as this, it is a major leap for Brandt. Today he started pulling himself up on the step stool. Of course, it isn't but maybe 6" off the ground and the average baby does this by 6mo, but it is such an amazing thing for him. Finally, a little sunshine after all the rainstorms that we've been going through!

I needed this so badly. I needed this development to help restore my faith and to motivate me to work with him even more. I am so excited, and I am sure that this is just he beginning of what will soon be pulling up on tables and chairs! :D Thanks for your prayers for his continued development.

A Double Dose Day

Today was a double dose of dread for Brandt. He had an appointment with the Pulminologist this morning, and he had therapy in the afternoon.

Because I have taken off for so many other appointment, my husband had to take Brandt to the Pulminologist alone. I think, with everything else that is going on with the neurologist/ ENT/ Audiologist, it was a bit too much for him to handle. He was freaking out. The doctor ordered his own series of blood work to be done (to check is immune system and allergies), and Brandt was extra fussy. My husband was definitely on overload, and saved the lab work for me to do with him this weekend--joy.

Then, Brandt got a nap and went school for his physical therapy session. The ITDS brought over a physical therapist to consult on Brandt's gross motor development. After evaluating him, they determined that the physical therapist would take over his care. The most alarming thing from today is that they had noticed something that I had noticed (but not yet come to grips with)--that Brandt seems to primarily use his left side of his body to do a "wounded-warrior crawl," while he sort of just drags the right side along. What that could mean scares the heck out of me, and I am still not ready to accept that. Oh, how I wish I would have told that to the neurologist, in the event that there is a different MRI image that might need to be ordered for that.

Luckily, the physical therapist has written her own short term goals--starting with him crawling with belly off the ground and then working on getting him to transition. She showed me a technique to help strengthen his core, and told me she will be able to have better insight on his disposition after she works with him for a month. She seemed so excited with his goal of being able to walk in 6 months (making him 17mo), but goals mean nothing to me anymore considering the goals that were set at his initial evaluation certainly were not going to be met. I am not doubting her ability, but I feel so helpless in this situation. Plus, with her taking over his care, Brandt's speech therapy is sort of put aside until he is walking... great. Maybe I can find some YouTube videos on how to teach babies to talk, I guess. :/

Right now, Brandt's school is accommodating him by letting him stay in the infant classroom since he would not be safe in the toddler room. However, I am terrified that there will come a point where they may say that he is too big for the infant room and not suitable for the toddler room, and then they would discharge him from their facility. What would I do then? I desperately need him to make an advancement to restore my faith and energy.

This morning, my husband asked me if I was depressed. He said he was concerned with me always feeling sick, sore, and sleepless. I quickly replied, "No!" Still, I was thinking--so what if I am? I have every right to be. I am scared to death for my son, and I have no idea what his future holds. Still, the truth is that I am not depressed--I am empty and emotionless. I am too busy going through the motions to feel anything at all. I push forward everyday, hoping and praying that I am doing everything I can for my son.

Hard to Digest

No matter how much I know Brandt is delayed, no matter how aware I am of the situation, no matter how much I see coming--nothing can prepare me for having to face the harsh realities of the situation--big or small.
With Brandt's 1st birthday just a few weeks away, I have been getting very nervous/ anxious with his school situation. Turning 1yo means transitioning into the toddler classroom. However, I have had a pre-conceived notion that he might not be able to enter the toddler room because he wasn't walking yet. Luckily this is not the case, though the true reality isn't much more hopeful.
I sat down with the director of his school today to find out how and when the transition would take place. Come to find out, she actually wanted to talk to me about the same thing. She reassured me that there are plenty of children that go into the toddler room before they can walk. However, there are some things that they do expect the toddlers to be able to do that he cannot. They expect the toddlers to be able to pull up, transition to a sitting position, and sit in a chair (rather than a highchair). Because he cannot do any of these things, he is not able to transition. Particularly with him not being able to sit in a chair, there are certain concerns for his safety.
While I completely understand where they are coming from and sort of saw it coming, it still wasn't easy to hear. No one wants to hear that their child is not progressing. No one wants their child left behind. It sucks because, truly, his school doesn't even have a high bar to meet--asking him to do those few things doesn't seem like they are expecting too much. It just sucks. This whole situations sucks.
How many more pieces of reality am I going to have to face? How many more things am I going to have to come to grips with? Is this just the beginning of my son being left behind and me being let down? How many more hard truths of reality will I have to digest? When will this end.... when will this end.....

A Fork in the Road

It has been a very mentally draining day today. Initially, after today's appointment, I posted the facts, but I didn't have a chance to address any of the feelings or frustrations...

The truth is we have hit a fork in the road. When I went to the neurologist, I went there looking for answers. I went there knowing that I was ready and willing to do whatever the neurologist thought necessary. I did not, however, go there considering my husband's feelings. I just assumed that we were both on the same page. That could not be further from the truth.

The greatest things about my husband has always been that we are extreme opposites, and we kind of keep each other grounded. He is protective, and I am liberal. He is sees the criminal/police side of the world, and I believe most people are good at heart. He loves to indulge, and I am thrifty. These opposites have always gave us a good, happy middle group. In this fork, however, there is no room for a middle ground.

Today, the neurologist ordered an MRI. With that, Brandt must be sedated. I am for the imaging, and my husband is firmly against it. Unfortunately, there is no compromise--he either has to procedure or he doesn't.

I've tried to listen to his frustrations. I totally understands that he is concerned with any complications that can come with sedation. I understand that sedation for an infant is not so routine, and I know the precautions that must be taken can be scary. Still, I feel like with Brandt having it at a Children's Hospital they are well-equipped to handle any situation. I feel like he is more afraid of what the tests will show than the actual test.

And, then, there are my reasons for wanting the MRI so badly. I should warn, this is not meant to be read by the weak-at-heart...
Before having Brandt, we lost a baby in the second trimester of pregnancy. We were devastated, and our perfect little world came crashing down. The baby suffered from multiple birth defects. Among the list, that baby had a severe type of spina bifida. The thought that Brandt could have that same condition is so real and scary to me. Furthermore, once I got pregnant with Brandt, we went to a perinatalogist to have a nucal transluency done to test for birth defects, including spina bifida. Unfortunately, when we went, the fetus was a week younger than originally thought, so they were unable to perform the test. Because they did not notice any of the other birth defects from the past pregnancy on the ultrasound, we decided not to return to have the NT performed. In my mind, hindsight, we should have returned. We could have known then if anything was wrong.

As a mother who carried Brandt through pregnancy, I feel like I am to blame for all of this. I feel like maybe I got pregnant with Brandt too soon after the other loss. I feel like I couldn't have a healthy baby in the first pregnancy, and I didn't have one with Brandt either. I feel like there must be something wrong with my body--like I have bad eggs or something. I feel like there was nothing I could do for that first baby, but I will definitely do anything and everything that I can now to give Brandt every opportunity that he can--including the MRI.

My husband feels like I am pushing Brandt too hard, like I am pushing beyond his potential. Yet, I feel like I should push, like I shouldn't just give up because I know that my child may have a condition. You keep pushing and raising the bar--you defy the odds and create your own expectations.

It is hard. I don't want to go against my husband and his fears with he danger of the MRI, but I also don't want to deny Brandt the best medical care because of our fears and frustrations. We have hit a critical fork in the road, and I hope that we can find a way to chose the right road together.

The Dark Road of Ahead

Today was a long day, and it took every ounce of our strength to get through it. Let my preface that today offered us some good news and some bad news.

Meeting the neurologist for the first time, we found him to be very personable and thorough. He wasn't one of those in for one minute and out the next kind of doctors. He spent over thirty minutes listening to our concerns, testing our theories, and evaluating Brandt.

First--THE GOOD NEWS--The neurologist did agree with the diagnosis of hypotonia, but he did not find it to be a severe case. He said Brandt has signs of muscle strength, and he seemed hopeful that it should continue to develop. That was hopeful to hear, and it did give us a shimmer of hope.

Now--THE BAD NEWS--The neurologist noticed that Brandt has sacral dimple on his lower spine. He noted this could be a symptom of a much more complicated condition, and he put in orders to have three images done of Brandt's spine. Initially, I was outraged because this was something we noticed at birth but was dismissed by all doctors and nurses. Later, as I was concerned as to what this would mean, I researched and found that this could be a symptom of spina bifida. Of course, we will have to wait for the MRI to be performed and come back for results before we will know anything.

In the evaluation, the neurologist also noted several things that he thought might be cognitive, so he went ahead an ordered an additional image of the brain since Brandt was already having to be sedated for the spinal MRI.

Following the evaluation, we were sent out for some lab testing. That was hard, and I really didn't have much energy left for that. Darrin and I had to hold Brandt down while they performed a series of ten blood tests and a urinalysis. It was hard to listen to him scream and cry, but it is harder wondering what the labs might tell.

We are waiting for the MRI to be scheduled, but we won't go back to the neurologist until May 10 for results. It will be a long game of waiting and wondering...

We are entering a dark road, where we go full speed ahead, hoping to find our way out of the darkness...

Praying for Answers--from God and the Neurologist

In just two more days, we will make the trek down to Loxahatchee for Brandt's first visit with the neurologist.

I did a lot of searching around to find a highly accredited pediatric neurologist. The neurologist I chose comes with a highly extensive background. He graduated from UCLA with residencies at Harvard Medical Center and Miami Children's Hospital. He has 17 years of experience, and seems to have good patient reviews.

I'm really nervous and anxious for Brandt's first appointment because I just have no idea what to expect. Our local pediatrician warned us that the neurologist might give him a quick look-over and ask us to come back in six months... I don't know if I can handle that--six months of waiting and wondering. Six months of unanswered questions--and if we go back in six months and the problems still persist, will it be more waiting and wondering to follow? When will we have answers?

I try to dismiss what the pediatrician has prefaced me with, and I try to remain hopeful that I have enough documentation from Brandt's ITDS worker and neuro-opthomologist in order to get him the testing necessary. I just want to know what we are up against. Is it just a developmental delay? Will he eventually catch up? Or, is it something more complex that will require a lifetime of attention and care? What caused all of this? I, more than anything, want to find out that I am just a neurotic mother, but my heart tells me it is more than that.

Every visit with Brandt's doctors and therapists gets harder; I die a little bit more inside each day. Still, I know that I am Brandt's biggest advocate right now. No one else will fight for my child the way that I do--it is up to me to provide him with whatever resources he may need.

I say a prayer each night for Brandt, and for all children with special needs. Tonight's prayer is going to be a little different. I will say a little prayer for strength and courage. As we travel to the neurologist, I pray that I can stand up for Brandt's rights and insist on immediate testing, rather than the "6 months of waiting" suggested by my pediatrician. I pray this neurologist will be able to provide my son with the best care possible, and I pray that the results help me to find a shimmer of hope.

Is this how it all begins?

It was scary when he was diagnosed with horizontal nystagmus at just 6 weeks old, but we were so relieved to know that he wasn't blind. He continue's to see a pediatric neuro-opthomologist every three months, with the sad understanding that he may one day need surgery.
Pressing forward, we continued to treat Brandt like a normal baby--only, perhaps, a little more spoiled. We spent hours a day laughing, playing, and reading with Brandt.
At four months, I noticed Brandt's muscles were not developing as fast as his cousin (who is just 3 weeks older than Brandt). I tried to shrug it off and tell myself that "every baby develops at his or her own pace."
By six months, however, my worries for him only grew. He wasn't doing much babbling, and hadn't made an consonant sounds. He wasn't rolling over or attempting to crawl. He wasn't sitting up. He had the "rag-doll" effect.
Still, I pressed forward and worked with him every spare minute I had. By seven months, he was rolling over. Just a month later, he was able to sit on his own. It was great to see all of that progress in such a short time!
And, yet, there were still so many other things we wasn't doing--transitioning into the sitting position on his own, pull up to stand, walking while assisted, cruising along furniture, speaking consonants, crawling...
At nine months, I took him to the pediatrician. The pediatrician diagnosed that "rag-doll" disposition as hypotonia, and he referred us for a pediatric therapist for a full evaluations.
Initially, Brandt only qualified for services because of a developmental delay in his speech. He was, however, appointed an ITDS worker who would work with him on both speech and physical therapy. After working with him a few times, she noticed more significant causes of alarm.
She indicated that Brandt's legs "frog" out when he commando crawls and may need a brace to correct. When he is placed in a standing position, he behaves as if he is unaware of how to bare weight. He does not flex his leg muscles, and he wobbles around with "jelly" legs. He does not understand how to move his legs--let alone to alternate them when moving forward.
So, of course, now my mind is plagued with a million questions... What does this all mean? Will he walk? Does he have a delay or a handicap? Where do I go from here? Will doctors perform the tests needed to give me answers, or will they make us wait? Is this the beginning of the rest of my life? Is this how parents of special-needs children find out? What can I do for my son? Or, what did I do to make my son this way???