Music to My Ears

We have been working hard this summer to work intensively with Brandt on a variety of physical, verbal, and cognitive skills.

Because Brandt has a pretty distinct developmental delay, his daycare did not see him fit to advance to the one-year-old classroom at his birthday. I made it my personal mission to make this happen, so I set some summer goals for Brandt. He has not mastered all of them yet, but he has come a long way.

Today, during Brandt's physical therapy, I asked the therapist if she thought he was ready to safely transition to the one-year-old class, and she felt very confident in his abilities. She noted that she has seen significant growth in his strength and balance development over the past few weeks.

After the physical therapist left, I went over to Brandt's daycare and met with the director. I outlined all the growth he had made while spending the summer at home with me, and Brandt demonstrated his abilities. She told me that Brandt's teachers had reported similar growth, and she felt that Brandt would be much more successful and challenged in the one-year-old room. It was music to my ears. So, beginning next Monday, Brandt will no longer be in the infant room!!!

I'm so thrilled and overjoyed that he will finally be with the toddlers. He will learn so much more seeing how they move and interact, and he will be challenged by the many foam obstacles throughout the room. This is a great move, and I'm thrilled we made it here by the end of the summer. God is good!
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Far from Reach

The brain and spine MRIs are just three days away, but they still feel so far out of reach. They were originally supposed to happen back in April, and it has been four months of nonstop delays and stress since.

My husband and I have very different viewpoints regarding the testing, so the longer the testing is drawn out and delayed, the more stress there is between the two of us. As each appointment has approached, the tension has increased. Because Brandt will have to be under anaesthesia for 3-4 hours, Darrin is very worried about a severe complication arising. I can understand his concerns, but he is being so extreme--saying Brandt might die or something. He says that it was a message from God that the MRIs have been delayed so many times. He says over and over again, night after night, that there is nothing wrong with Brandt. He says that we should just cancel the MRIs and love Brandt the way he is. He says that he is going to laugh in my face when the MRIs show nothing. And, he has pointed the finger, saying that if anything does happen to Brandt, it will all be my fault.

And, I've heard all of his concerns and thoughts. Although I think he is a little radical, I also understand him being scared. I understand him being scared, but I do not understand him wanting to just pretend that there is no problem, or to ignore the problem. And, I'm tired of listening to him try to convince me--hour after hour--to cancel the MRIs. I understand being scared, but I have no room to be scared because if he sees any sense of vulnerability, he will pounce on it. I have to be strong, and I am okay being strong because I am the only one who is going to battle for Brandt.

But then comes the big--what if? What if they do not find something? Where do I go from here? Or, do I just let things be? How will Darrin react if they don't find anything--and what will that mean for us? Or, what if they do find something? Is this going to be many, many more months of testing and waiting? And, will that waiting mean more disagreeing? It's just all a bunch of chaos right now, and I just wish that we were in this together...

Mastered Goals 8 and 9!

Goal 8: Crawls with Belly off the Ground
This was such a tough skill and many people told me Brandt would probably just skip it all together, but he finally got it! At the recommendation of the physical therapist, we bought a little scooter board and placed it under his belly to help Brandt get used to the feeling of being on his knees and balancing. Once he started to get up on his knees, we put toys and snacks in front of him to entice movement. And, when he falls back down to drag on his belly, I give him a little lift to remind him. He is doing about 50% knee crawling right now--he drops to his belly when he gets really excited and wants to move quickly, and I am okay with that because he has shown the world that he can do that skill! Even better, when I take him to the park that has woodchips like Brandt's school playground does, he is 100% on his knees!

Goal 9: Walks with a Push Toy without Assistance
Walking with a push toy has also taken a lot of therapy assistance. The therapist advised me to weigh down the push toy with little leg weights so that it does not get too far ahead of him. This gives him more control and confidence, while still allowing him to work on his balance. Now, he an use both a weighted and unweighted push toy without me having to hold him up. And, he is all over the house with his push toys. The only thing he hasn't figured out yet is how to back up or turn it when he gets stuck, but I am sure he will get that with a little more practice.

We have had one crazy summer, but despite all of the illnesses and doctor's appointments, we have made it through with lots of love and faith. We have stayed focused on helping him succeed, and we are ready to tackle whatever lies ahead!

Reschedule and Regroup

It has been a very long and draining two weeks, with Brandt first battling a belly-bug and then being hit with an upper respiratory infection. It was many sleepless nights and napless days for the little guy. Four different medications and two shots later, I think he is finally on the rebound.
Unfortunately, because he was on antiobiotics, St. Marys (once again) would not do his MRIs that were scheduled for this past Thursday. I feel like a broken record as we have been trying to get these done since April, but we just seem to have to keep rescheduling for infections. Leading up to the appointment day, I prayed with all of my might that they would do the imaging, but I am at peace and have decided that all I can do is just let go and let God. We'll try again in a few weeks, but I'm leaving it in God's hands.
With that being said, I talked to the doctor about what we can do to prevent all of these infections. A friend of my had suggested taking him out of daycare for the summer, but he's been out for a while now and that really did not help. The doctor seems to think these infections are being triggered by asthma and allergies so he increased the frequency on Brandt's breathing treatments and the dosage of his allergy medication. He also added in a nose spray. The doctor continued, stating that if the problem persists, we might need to consider removing Brandt's adenoids--which is stressful because we should've just talked to the ENT about that when he was having his tubes done. I'm hoping that maybe this new medication regiment will help keep his passages clear and we won't have to deal with the latter.
But, for now, all I can do is deal with the rescheduling, regroup, and keep pressing forward...
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We are heading out of Miami, and I'm hoping this is the last trip down for a while!

Today's ENT appointment was short and sweet. The doctor took a quick look at Brandt's ear tubes and sent us on our happy way. We have to follow up in 3 months but that's not a big deal.

The cardiologist appointment went good also. They did a quick EKG, which was far simpler than his previous echocardiogram, and then we met with the doctor. She did agree that his heart murmur was a little bit more on the louder side, but she believes that to be triggered by his anemia. Everything else checked out perfect!

And, THE BEST PART--the cardiologist finally put an end to my husband's rebuttal on the dangers of MRIs. First, she said that she did not believe that Brandt's heart shunted blood during his previous surgery, noting that the bluish coloring was more likely a result of a blocked airway from the breathing tube. Then, she continued and said that if Brandt has to be under anesthesia, it is a better idea to get everything done at once (rather than his idea of doing one at a time, as needed). I was so thrilled, I asked her if she could repeat that again a little louder so my husband could hear!

All in all, it was a good day, and I plan on sleeping like a baby tonight!

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Life doesn't stop for a belly bug

It has been another exhausting week, and the nights of sleep never seem long enough to counteract the draining days ahead.

A week ago, Brandt got a bad stomach virus. I took him to the pediatrician, and they put him on the BRATS diet to help bind him up. Unfortunately, he had nonstop diarrhea, sometimes as much as six episodes an hour. By Sunday evening I took him to the ER for dehydration. In the past week, I have probably changed around 200 diapers. And, of course, that means one heck of a diaper rash. We tried 3 types of cremes before the doctor finally gave him a prescription for an infection. And, along with that, we are giving him a sitz bath three times a day and giving him time to go around diaperless to let his little boodie air out. But, it has just been miserable for him.

But, just life goes on and our busy schedule does not leave room for down time. Brandt's life doesn't stop for a little belly bug.

Tuesday he had therapy. He did a little knee crawling and walking with a push toy. He worked on getting up from and sitting down in a chair--which was not the most successful thing.

When Brandt started receiving services 5 months ago, the goal was for him to be walking by 15 months. Two months into it, Brandt got transferred from working with an Infant and Toddler Developmental Specialist to working with a physical therapist. The physical therapist set the goal for walking at 17 months. He is 14 months now and we are at the halfway point for the goal, so I asked the PT if she thought we were on track for that goal. Her answer was this apprehensive dance around the question. She went on to explain that the longterm goal was not so important, that completing a goal was not as important as showing a concrete mastery of the lesser goals that will get him there, that she'd rather see him crawl with agility, strength and coordination... She could've just said a simple "no" and been done with it. This lady is so used to working with special-needs children that I think there is a bit of personal disconnect for her with the feelings, emotions, and hopes involved in goals.

But, that was only the beginning of the week. Wednesday meant a follow-up with the geneticist. Previously, we had some labs done that showed Brandt had Isovaleric Acidemia, a genetic condition where the body can not break down proteins into the amino acids needed for muscle development. Because it was not found on his newborn screening, a second test was ran. Thankfully, the second test was normal. But, that meant back to the drawing board. The geneticist ordered more bloodwork, this time testing for Pradar-Willi Syndrome and a Mitochondrial Disorder. She is also ordering an ultrasound of the stomach with special attention to the liver, but she was speaking so fast, I am not sure where she was going with that. But, she gave me the paperwork to see if St. Marys can do the blood draw and imaging next week when he has his MRIs, so hopefully they can save him that agony.

Today, I took Brandt to the pediatrician again for his belly bug. Because his tummy troubles are showing no signs of letting up, they sent off a stool sample to be tested. Hopefully his belly will clear on it's own in the next day or two, but at least they will know how to treat it next week if it doesn't clear up.

And, so life goes on. Tomorrow we are heading back down to Miami Children's Hospital. This will be the first time we have attempted to see two doctors in one day, so it should be extremely long and miserable. The follow-up with the ENT should be fast, but the EKG and consult with the cardiologist will be the part where I will be ready to throw in the towel.

But, life doesn't stop for Brandt...
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Mundane Day

I woke up this morning to a very sick baby again. This time, a flu bug.

It is so hard and draining when Brandt is sick. There are the frequent diaper changes, refusal to eat or drink, sleepless nights, napless days, and constant irritability. But, when Brandt is sick, there is so much to it than just fighting the symptoms.

When Brandt is sick, it means we lose time from developing and strengthening his muscles. And when he is sick every other week, he loses A LOT of time. When he is sick, he gets extreme muscle fatigue--he falls over or drops his legs for no reason, struggles to pull up, and has difficulty sitting with stability. Last night, he was sitting flat on the floor, and then all the sudden he just fell back--a huge thud as his head hit the tile. It can be very scary at times. And, at times, it can be draining because I feel like we have to start over every time he gets sick. From the beginning, we have to work up to a routine of building his agility and strength.

And, then, comes the loneliness and exhaustion for me. At least two days a week, we are at a doctor's office of some sort--none of which are ever a quick in and out. On Brandt's doctor appointment days, I have to pack a diaper bag for the whole day and pray that somewhere in there Brandt will lay down for a nap in his stroller. It takes a lot of patience to wait in room after room for hours before seeing a doctor--and then to do that with a tired baby is down-right miserable.

But, then, when he's sick, we're at home in isolation--desperate to keep him hydrated, given breathing treatments regularly, and away from any other germs. There comes a point where doctor's appointments become a novelty for me because it breaks up the mundane days at home with a sick baby.

As much as I love having time with my son, I sometimes need a break from reality for some adult interactions. But, the truth is that no break, no matter how long, will make it okay. Nothing can make this okay, and nothing can take this feeling away.

And so passes another mundane day...
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Another Day, Another Appointment

So, yesterday Brandt and I went to Jupiter for a visit with the neuro-opthamologist. This time, however, Brandt wasn't the only one being checked--I was, too.

The doctor wanted to see both of us, using me as a baseline comparison--as I am the source of Brandt's nystagmus. I was born with nystagmus, astigmatism, and a lazy eye. I have had eye surgeries twice as a baby and once as a teen.

The appointment went pretty well for Brandt. His nystagmus is less prevalent, and he doesn't do any awkward head tilts to get a clear field of vision. He is able to track well, and his eyes dilate swiftly when adjusting to light. The doctor seemed to think Brandt's vision is pretty clear and sharp, so no glasses for now.

Onward to me, he recommended I have another eye surgery. Now, what he was recommending was not the glamorous "lasik laser eye surgery." This is hardcore hospital outpatient surgery where he'd physically perform surgery to the muscles in my eyes. Which, last time, it took me just over a week to heal from. So, as appealing as that sounds, I'll have to pass for now.

Right now, I need to focus on making sure Brandt is taken care of and has all he needs. And, with all the appointments going on right now, yesterday was just an all-around blah appointment. It was just anther day, another appointment.
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Mastered Goals 1 and 3!

Goal 1: Drinks from a Straw
We have spent the past month using a special straw cup that allows the parent to squeeze, thus pushing fluid up the straw. The first week with the cup was a disaster--with more milk on his shirt than down his throat. But, eventually, he started to figure it out. Two weeks ago, we graduated to small juice boxes. And, now, he can finally drink the whole juice box with minimal spillage. He can even drink out of a full size straw in restaurants!

Goal 3: Bangs Two Blocks together
Brandt has been working on banging two blocks (or objects) together for quite some time, but he finally got it! The biggest thing with banging the two blocks together is that he needed to actually move both hands--not just banging the objects--but actually moving BOTH hands together to bang. And he finally did it.

Also, these weren't goals, but they were things we worked on. Brandt now points to things he wants or admires, and he waves hello--so hopefully waving bye-bye is just around the corner.

We have been working hard this summer to help Brandt see success, and we are definitely seeing the progress. He is all over the place and loves to be on his feet now. He is fearless and hard-working, and I know he will do everything he needs to when he is ready!
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