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Archive for the ‘Medical’ Category

To Newly Diagnosed A-T families.

I often think of our children who have A-T in generations. Every year of an A-T child’s life is approximately five for the rest of us. That would make my seven year old nearly thirty five. Although I swear to you he ages me as quickly as he “ages.” About a handful of parents new to the A-T diagnosis contact me each year. It is so hard to feel how heavy the weight of the diagnosis is on them. After Braden’s diagnosis we were in heavy mourning for about a solid year. Extending a hand to these families, while heart breaking, makes me feel as if I can help in some small way. It’s not a fun club to belong to, but there is much we can share with each other. We are now four years out from the day he was diagnosed. What’s life like now compared to then?

When your child is first diagnosed it feels as if there is a giant elephant in the room. However, slowly but surely he finds a quiet corner to sit down in and makes himself as unobtrusive as possible. Oh there is no ignoring our elephant and he seriously smells. He wreaks havoc on most days, but we have learned that there is no getting rid of him so we might as well learn to accept him. In short, we have learned that A-T is a giant beast of a diagnosis. It is a heart breaking soul crushing situation to be in to know you will outlive your child. We have learned that despite the hardships we can and will persevere. We have learned that it is very easy to become negative. Parenting is a tough enough gig to start. Throw in cyclical vomiting, oculomotor apraxia, dysarthria, incontinence, tremors, and more big long words that we didn’t really understand in the beginning and it’s easy to get overwhelmed. Hang in there! You will learn them all and can do this!

So, wait, am I saying I am at peace? #$$%@^$ No! Gah! No, what I have learned is that a code word is needed with friends and family to let them know A-T is getting the best of me and that I may need a bit of grace, an extra hand, or to leave the room unexpectedly. After all, I don’t want Braden to see me crying over A-T. Not the way in which A-T makes me ugly cry. So, we get the sniffles over here. I’ve learned that sometimes you have to “do” and not “think.” I’ve learned organization is key where school and doctors are concerned. I’m thankful for every time my parents didn’t yell at me for questioning authority in a healthy way. If they hadn’t, I doubt I would be as capable of questioning doctors and administrators without fear. I have learned to embrace our family’s uniqueness. We have developed a twisted humor that most wouldn’t understand. We’ve also learned to seek out the happy and to do things now. You will get there.

We’ve learned that we don’t have to raise the next Harvard grad. We have to raise a child to be happy, as healthy as possible, and respectful. That’s somewhat liberating! We remember to take notes from those generations before us as well. Ask for things before you may need them as it will lay the foundation. Plan holidays and traditions now in preparation for how things will be. For example, move furniture now to be more handicap accessible later. Teach younger siblings to keep toys out of the main pathways so wheelchairs may go through them. Move Easter Egg hunts inside or have places outside where eggs are hidden at a height in which the child won’t have to stoop down. Start eating foods in fun ways that the kids will need later. We started drinking soup and other foods from coffee mugs. Spoons are really hard for our kids! We preemptively strike! This will eliminate “losses” when they can no longer to do these things. He didn’t use a spoon to eat soup! So, no loss. Just remember to not compare A-T kids. There are varying levels of both ability and health.

We’ve learned that when they say that your child will experience a rapid decline at age five they REALLY weren’t joking. That free fall lasted a year and a half. We’ve learned that it is terrifying and just how much of a team we need to be under this roof. We also learned how important counseling is. Take care of you so that you can take care of them. It’s the whole “Put your oxygen mask on first” philosophy. Stay as solid as you can in your marriage. A-T will expose every crack in your foundation! Know that you will most likely lose some friends. It will hurt. However, the friends that remain are the ones that deserve your respect. Learn to forgive those that walk away. It speaks more loudly of them than it does of you. Keep your chin up!

If you need a shoulder, please don’t hesitate to send me a message. I will listen. You are not alone.

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Health News Update

Thank you Cait for your sweet email last night! I would be happy to give everybody an update on Braden’s health. Since this is more nuts and bolts, I hope you don’t mind the bullet point style type update. While my emotions are more free-flowing, I “handle” the medical situations in a more tactical type manner. That’s just my self-preservation kicking in!

  • Pulmonology: In short, it’s an issue. What used to just be a coughing until we vomited situation has now become a mucous plug problem. Braden’s lungs produce mucous like a Cystic Fibrosis patient. He attempts to cough but his lungs aren’t as strong as a typical child. The mucous gets stuck in his esophagus that is too soft (tracheomalacia.) So, the mucous creates a plug making it hard for Braden to breathe. We are working on this situation. While there is no medication that can assist him that we are aware of, we are looking into  cough assist and percussion vests. This will be in addition to his inhaler, hand held percussor, nebulizer, and suction machine.
  • Immunology: We have been in a sinus/ear infection cycle. Due to his IgA deficiency, Braden has excessive nasal drainage. The stagnant nature of it causes it to fester in a manner of speaking and it becomes infected. We are hoping that this last round of antibiotics does the trick for at least a few weeks!
  • Gastro: We are continuing to deal with our normal bag of tricks in this realm. We have noticed a slight tick up in the amount of fecal incontinence issues here.
  • Orthopedic: Braden’s feet are turning inward a bit more than they have in the past. We continue to stretch his legs. No medical intervention or devices are needed for this at this point.
  • Mobility: We continue to fatigue more rapidly than before as expected. Braden uses a chair for distances but is ambulatory during play and for short distances. We have shown an increase need for assistance with smaller tasks.
  • Neurology: We have noticed a slightly longer delay in responding to questions. This is due to the deterioration of his cerebellum. We continue to have the same difficulties with tremors and such.
  • Cardiology: Knock on wood. Still all good here!
  • Nutrition: We have not gained weight in a year and a half. This is largely due to the extra movements. Children with A-T move continuously to counterbalance their ataxia. This burns calories. It also takes more effort for our children to eat burning more calories. So we stuff as many calories into him as we can. There is always a green light to feed him those foods in which most parents would say no.  At some point we will be “forced” into considering a feeding tube to get that critical nutrition.

In short, how sick is Braden? It’s hard to say. The breathing issue is our biggest area of concern. It takes diligence. We have to pay attention. One ear must always be trained to listen. We do our best to simply live as normally as we can. We have days where everything is just fine and then “boom” we have a breathing situation and those moments are very critical. Then there are those days where you would swear something could easily go wrong and everything is just fine. So, you just never know. There are a few things that lead to death in our sweet children: lung failure, infection, and cancer. Despite the writing on the wall, we are doing all we can to focus on the LIVING and LOVING life. It isn’t uncommon for Braden to not be able to breathe, cough, vomit, and look like hell, and then just minutes  later be a giggle machine. May that never change!

Please hug the people you love and tell them so! Life is a gift and not a given.

Hugs,

Becky

Today

Today I am driving three hours round trip to take Braden for a vision appointment. We will watch a movie, ok he will watch a movie while I listen to it. He will sigh about twenty minutes into it, and I will know the conversation is about to happen. “Mommy, why do I have to go to Birmingham AGAIN?” he will ask. I will then take a deep breath and say for the hundredth time, “Because it is where your doctors are Sweetie.” I try to keep it as simple as that. “Well, it’s not fun to go this far for THAT!” he will say crossing his arms defiantly across his chest. Oh how I agree my sweet boy. You are right. Today is an easy appointment. There will be no blood draws, no scans, no ultrasounds, no shots, no poking or prodding really. Yet, lately Braden has been asking hard questions. So, the drive is what I fear the most. There are no other adults with me to buffer the conversation in a new direction. My child takes right after his mom in his ability to ask that pointed and direct question. It will be my turn in the hot seat for three hours today. I wish he could be distracted easily!

More if I could, but I hear my name being paged by Braden after some coughing. That means I have vomit duty. Comes with the territory of having A-T.

Hug somebody you love today, tell them you love them, and be thankful for another day. Life is a gift and not a given.

*Not proofread. See the word vomit above.

Seasons

I tossed the bit of paper in my purse, gathered our belongings, and walked out of the room with a small sigh. Later in the day I pulled out the empty bottle, dirty bib, and the small slip of paper from the diaper bag. Like a leaf blowing in the Autumn breeze, it has since landed on every imaginable surface in our kitchen. Most recently it was found casually laying atop a pile of mail. Despite the lackluster respect shown to that small slip of paper, its significance cannot be overlooked. That small rectangle is Braden’s first prescription for a wheelchair.

More than just seasons are changing around here. Tomorrow we head to Birmingham for Braden’s triple endoscopy. A gastroenterologist, pulmonologist, and ENT will simultaneously scope him. It is going to be a very challenging few days ahead of us. I will post random pictures from our trip on this site as I am able. Braden thinks it’s fun to make funny faces for the camera. He also likes to have pictures taken of what is happening so that we may show it to him. Our little man knows what he is about to do. We make sure to be honest with him in terms he can understand. He has got to be one of the bravest people I know. *sigh* I just wish he didn’t have to be!

Running

Today I watched the kids, all three, splash in my parents’ pool. I listened to them giggle and yell, “Watch me! Watch me!” I am fairly certain that I will cherish that moment for many years to come. My family finally feels whole and complete. Every day that the five of us get to argue over who is first out the door, gets to hold Mommy’s hand, or gets to choose what movie we watch together, is one I want to remember. We’ve recovered from our Make-A-Wish trip, and now we are enjoying our summer to its fullest.

We strive for as much equality between the children as possible. While Genevieve is busy filling her summer with dance and tumbling classes, we have Braden in a summer fun program at United Cerebral Palsy. He came home last Friday so excited that it was contagious! It was so uplifting to bring him somewhere that I didn’t need to worry about how well he would be cared for or understood for that matter. For two and a half hours he was simply a boy excited that he got to go to “camp.” We also have a week-long art camp coming up for him, and once summer fades to fall there is a differently abled dance class he gets to participate in. Unfortunately, summer isn’t all fun and games for Braden though. We have an appointment with two occupational therapists for a full evaluation as well as a physical therapist at the children’s hospital. As if that’s not enough, he also has an appointment with the Low Vision Clinic. This isn’t because we don’t believe he can see, but we need to keep careful tabs on his ocular motor control and to see how well he can see. We even have a behavioral therapist lined up to help him learn to cope with his body and emotions. No stone will be left unturned.

The real downer though is his upcoming immunology appointment. You see, when your child cries, it’s upsetting. When your child screams in abject terror, it’s painful. Immunology equals a blood draw. Braden and needles don’t mix very well. He begs, pleads, tries to strike a deal, promises he’ll be good, and anything else that comes to mind to avoid the tubes of blood they need to gather. If only he could understand that we do not do this to hurt him but rather to keep him as healthy as we can for as long as we can. Alas, he is only five years old and doesn’t understand. That’s the double-edged sword. I’m also quite thankful he doesn’t comprehend the full-fledged war that is occurring inside his little body. I’d rather he be blissfully unaware and soothed with some chocolate and a train ride. The hurts that won’t be mended so easily are only right around the corner. I do my best to not think of them just yet, but I must prepare.

Prepared is something that you almost have to be when you have a child that must be parented outside the box. Otherwise, you’d be simply running in circles chasing your tail. There is a rather large binder that contains Braden’s medical records, important documents, notes from doctors, our social worker and attorney’s phone numbers, our rights, bits of the kids’ artwork that gets snuck in, and important information about his condition. Oh there’s more in there, but you get the idea. It’s easy to get things jumbled, and where my children are concerned, I would walk over hot coals before I let them down. So tonight as the house is quiet and everybody is asleep I run through all that I need to have prepared for his upcoming doctors appointments. My questions written down, requests recorded, and thoughts are all being laid out. We all want the best for our children, but life demands a bit more from some of us to achieve just that.

 

Small Steps

We aren’t exactly sure the exact day we started wondering if something was wrong.  Braden was definitely older than two.  It was somewhere between two and two and a half.  My best advice in any situation where a parent feels as if something is off or not quite right, is to trust your gut.  We didn’t stop until we had an answer, even if it felt a bit as if we were on a wild goose chase.  However, each doctor or specialist started to say the same thing.  We kept hearing the word neurological.  So, by the time we made it to the neurologist, we knew we were in the right spot.

I’m going to take a guess that Braden’s case is probably unique in that he was adopted and his biological mother used illegal substances when she was pregnant.  I don’t think there are the words to express how angry this makes me.  Each time I get all tied up about it, I remind myself that she did allow him to live.  If she hadn’t, I would never know just how sweet his kisses are and how high he makes my heart soar.  My fear is that this fact, which we have treated as private information until now, may have interfered with his A-T.  I will have to ask if that’s possible when we go to Johns Hopkins in June.  This fact also has lingering side effects that we struggle with on a daily basis.

Before we even got Braden’s diagnosis, we started making small steps towards helping him with some behavioral concerns.  At this house, it’s all about baby steps.  We feel like Braden is trying to climb a mountain without any training, and so we approach it one small step at a time.  One of our challenges is eating.  It’s clear that Braden’s ability to handle a spoon and fork have not improved at all since we started the idea of using them.  However, he used to have immensely better table manners and how he ate was much more appropriate.  It’s clear that there is anxiety for him when it comes to eating.  So, we’ve broken it down for him.  We’ve made eating a one on one experience, a bonding time.  We’ve limited the amount of food he has in front of him.  We’ve changed him from a booster seat to a high chair without the baby parts (basically a chair with a high back.)  Although, we pick up his “new chair” (one we’re trading with the awesome owner of Kid Venture here in Huntsville!) this week.  We’ve purchased tableware that suction cups to the table.  We have curved silverware.  As many distractions that can be are eliminated, for example the turning off the tv.  It’s a production.  This is our life.  This is the consequence of not only being exposed to drugs, but of having A-T.  This is our reality, and it’s hard work.  We don’t mind the “work,” but it breaks our hearts that Braden has to work so hard to do something that comes so easy for most kids.

I will try to be honest here, so that other children who might follow might get an idea or two of how we manage the day-to-day.

Today is another day that I get to kiss my kids, and for that I’m so thankful.