Picture

I just came across this amazing site.
The Littlest Heroes Project.
Here is the description...

Our mission at The Littlest Heroes Project is to help provide and capture memories for families who are dealing with hectic schedules due to having a child who is suffering from a serious illness or life altering disability. We understand that in the midst of being thrown a diagnosis and having to switch from a “normal” life to a life that is totally different, and often scary, things like getting photos taken is sometimes a huge challenge and is one of the last things families are thinking about.
Our photographers are on hand to travel to homes, hospitals, clinics, fundraisers, and benefits to help capture your child’s journey in a “Day in the life” sort of style and work personally one on one with your child and entire family to get those special family photos and moments that you can cherish for years to come.

Oh I want to do this so bad! I have been searching and searching for a photographer that will do just that for our family. I submitted an application...so fingers crossed!

Check out some of these amazing families and their pictures.

Also if you are a photographer...you can sign up to help provide this service to families.

Eligible

Brayden had one of his many school planning meetings this morning. Today was about eligibility.
All of Brayden's reports from his doctors, his therapists and other therapists brought in to assess Brayden, were gathered and reviewed. Brayden has a lot of paper work and a lot of people that he sees. Kinda strange to see it all piled up and try to make a good summary that would best describe him.

The eligibility meeting is to determine if Brayden qualifies for Special Education Preschool and under what category that falls in to. There are a list of 14 categories in which a child could be eligible. Where did Brayden fit?He is going under the "Other Health Impairment" (he has too many things and not one label fits him) and "Visual Impairment". We thought he would fall under the "Severe Disability" category but Virginia is removing the category this coming school year (who knows why). It is my understanding that these will help determine which services he will receive once in school. Under the "Other Health Impairment" he could receive physical, occupational and speech therapy. Under the "Visual Impairment" he would obviously receive vision therapy.

The meeting was easy; pretty straight forward.

Next we have the IEP meeting. The IEP is when we set goals/expectations for Brayden in school thus what kind of services and how often he receives them. So those moms who have been through it before please pass on the tips!

Who are the people in your neighborhood?

Oh, who are the people in your neighborhood

In your neighborhood, in your neighborhood...

(Sesame Street)

My neighborhood is Waterford, VA. It is a bit of the country.

Honestly, I did not like Waterford when we first moved here. I loved our house and the land but not the country. Our first week here, I discovered that there is no pizza or Chinese delivery (I have no back up plan for dinner). The same week we found a stray cat (who is so huge I am terrified of it) that wanders our neighborhood. The cat welcomed us with a dead mouse on the front porch. And we lost power that week...which means for those not familiar with the country life, there is no water because of a sump pump and wells. Thus no flushing of the toilet, running water, etc. Not fun.

Fast forward almost three years later and I love it here. I do not love the country living and having to "go in to town" to run errands but I am so happy with our neighborhood.

Since Brayden entered our lives, we are always busy with his needs and schedule. Every doctor, hospital or test requires a significant amount of time. And we have two other boys! Our neighbors have been our help. I have called the neighbor asking her to grab Carter and Luke because I called 911 for Brayden. She has been at our house before I could even hang up the phone. Another neighbor takes Carter every Tuesday morning so I can get Luke to preschool and Brayden to his appointments. Another neighbor watches Carter at any time, even when the last minute things that come up. All have provided our family with meals! I have come to rely, love and trust these women. I know that I can call them no matter what, no matter when for help.

Jeremy and I try to keep the chaos of the doctors, hospitals and tests away from the older two boys. We try not to have them worry about where we are, where they are going and who they will be with. For the boys to go to a neighbors house is a treat! They enjoy the neighbors (who according to Carter have much better snacks than I do).

It is an absolute comfort knowing that these people are there. I adore each of them and appreciate them more than I could express and consider them great friends. There is no way possible that I could have made it these past two years with out them.

As a small token of my appreciation, I treated these amazing neighbors to lunch at Tuskies. I could never repay them for all that they have done for my family so a lunch was the least that I could do.

These are the people in my neighborhood. Kind, loving and thoughtful.

Upgrade the Chair

Brayden received his new chair. And I am pleased.

We have been living with this one. It can be used for babies and turns into a toddler rocker. It is not a special needs chair. Just a chair I picked up one afternoon at Babies R Us because Brayden needed a place to sit and the normal baby bouncer seat could no longer hold him. This little rocker can hold up to 30 pounds. It has worked pretty well for Brayden and he likes it...I do not. If you know me at all then you know that I do not particularly like the baby things with "stuff" on them. I like the simple things in simple colors, preferably neutral colors. I never liked having an exersaucer for Carter and Luke. Those big, bright colored plastic things have been such an eye sore to me. This little blue chair has been used and used by Brayden. It is surprising that it lasted this long, despite the amount of vomit and washing that it has been through.

When the opportunity came to order Brayden a "special" chair, I was excited but still a little weary about having a big ugly chair for him. We were told that it would be blue with a blue base. And we they say blue, they mean bright, bright blue. Do we really need a chair to be a bright color, drawing more attention to the disabled chair? However, I would put up with the bright color despite my love for all neutral colors because Brayden needed a good chair to support him.

The package came (who does not love to find a package at their front door!). I opened it up expecting to find a giant blue thing. I was digging through the packaging and came across this:

It is brown with a wooden like base. I love anything chocolate brown, our sofas in the family room are brown. Brayden's chair fits perfectly with our house.

I like it not only because it looks great and is great for Brayden but because it is more normal. His life sticks out because he is so different. I did not want a chair that would stick out too.

And in case you are wondering it is a chair called the Special Tomato.

What does the EEG say? And GI?

Brayden had an EEG today.

What is an EEG? Let's ask WebMD...

An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity.

Brayden has had a few EEGs in the past and needless to say, the tests have been stressful. Each electrode is strategically placed; if he wiggles to much the electrodes can come loose and need to be put back until all are on properly. Try putting twenty or so electrodes on a child who cannot stand for his head to be touched. Once the electrodes are in place, he must be still and then hopefully fall asleep. Once asleep for several minutes, we wake him up and flash a strobe light in his face (to try and induce some seizure activity). Sounds fun right?

Brayden did amazing today. He was a little frustrated when the tech was placing all of the electrodes on but he settled in and actually feel asleep.

Once the EEG test was completed, Brayden's neurologist stopped in to quickly review the results.

What did the EEG say?

Brayden's left side of the brain had very little activity. At first I thought that was good, right? Not really, there was very little activity, as in not much at all and there should be more. But this was not a surprise to us, that is what his other EEGs have said. We were hoping that as he got older there could be more going on...maybe next time.

Brayden's right side of the brain showed lots of abnormal activity; many little spikes in the reading. This is probably where Brayden's seizures are originating.

Brayden's is still diagnosed with partial complex seizures. The neurologist still thinks that he will be moving from partial complex to generalized. For now, his seizures are dealt with as partial complex and he will continue on the same medications, just increasing the dose.

On the way out the door this morning (as we were heading to Children's for the EEG), Brayden's GI doctor called. Brayden's vomiting has not been any violent retching for about five days and no signs of blood so the doctor said NO hospital stay! We will continue to watch him and for now, live with a moderate amount of vomiting a day. Of course we were told that if Brayden's vomiting gets out of control or shows signs of blood again, then we are to check into the hospital.

I have given Brayden a stern talking to about the vomiting. He is going to do his best to keep the vomiting to a minimum (and seizures).

It's not the answer but it's something

The GI doctor called last night to review the blood and lab work. Everything looks normal except Brayden has the rotavirus. The rotavirus is giving him diarrhea, which started the end of last week. I thought Brayden had diarrhea because of us giving him lots of Pedialyte the past several days instead of his full serving of the formula.

The virus has to runs its course and should last only about a week.

Since rotavirus really only lasts about a week or so, it is highly unlikely that it could be the cause of the vomiting for several months. The rotavirus is just an extra bonus. We have things coming out the top and the bottom! It is around the clock fun here (or should I say laundry). We are checking back in with Brayden's GI doctor later this week.

So what's the answer for the vomiting?

Who knows.

Waiting

We arrived at Children's Fairfax office at 7:30 a.m. to see the GI specialist.

Well, we waited...

We waited for over an hour before we saw the doctor. The GI specialist asked us tons of questions, trying to assess Brayden's current situation. He wanted us to go to Children's Hospital downtown Washington, D.C. to have Brayden's G-J tube checked to make sure it was in the proper place, have blood work, urine and stool sample done.

We left Fairfax for DC. We waited in traffic, lots of traffic.

Once at Children's, we checked in with Radiology and Blood work to get in line, since we were add-ons and still hoping to get things done quickly.

Well, we waited...

The blood work we only had to wait for about 1/2 an hour. In radiology, to check his tube placement, we waited a couple of hours. We finally entered the room for the test, changed Brayden into his gown and we waited.

The radiologist finally arrived (whom we have seen before and really like him) checked the tube placement and it looked good. Then he took out Brayden's tube and gave him a new one (to find out how this works click here for our last experience). So that is looking good. Brayden did amazing. The tech strapped Brayden to the table. I literally mean strapped him down with three Velcro straps. Brayden did not fuss. The doctor slid out the old tube and put in the new one, without a fuss from Brayden.

So what is plan for Brayden?

The G-J tube placement was not an issue. This could have been an easy answer for the vomiting problem. Since it all looked good that is ruled out. We will wait on the blood work and samples to see what comes from those results. The GI specialist wants Brayden to take very big doses of one of his medicines (double what he has been taking). Over the next 24 hours Brayden will be feed by the J tube a mixture of half formula and half pedialyte. Then continue to feed him formula very, very slowly for 20-24 hours/day for the next few days. If that does not show much improvement then we may check Brayden into the hospital, have him only receive IV fluids for a few days and possibly scope his stomach and intestine to see if there may be any problems. Depending on what the outcomes are of all the mentioned things...I have no idea what the real solution will be because the problem is not easily found.

So for now we wait.

The funny thing is I was sitting in the car today complaining to myself (in my mind) about how awful all this waiting is: waiting for the doctor, traffic, tests, results, outcome...Waiting is hard. Waiting is exhausting. Jeremy and I call it the hospital hangover, all of that waiting is so draining. I am exhausted right now. Anyway, I was completely lost in my thoughts while driving when I started to listen to the radio, which had been on the entire time. I started listening to the words of a song:
While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait
I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy
But faithfully, I will wait
Yes, I will wait
While I'm Waiting - John Waller (click to hear song)

Hmmm, really? Did that have to come on then?! I was kind of happy complaining about waiting. It felt like a challenge...all of this waiting. Am I waiting on the Lord? Am I peaceful in the waiting? Am I faithfully waiting? I know that I am waiting but how am I waiting?

Please stop the vomiting

The vomiting is not getting any better despite our best efforts with medicines and changing around his food.

Last night was the worst we had seen in a while. Brayden vomited a few times during the day but then around dinner time he would not stop. Between 6:00 and 11:00 he vomited at least 10 times. There is nothing there to vomit so it was mostly a horrible retching, over and over. It was a back and forth decision about whether or not to take him to the ER. I never really feel like the ER knows what to do (unless we go to the one at Childrens, an hour away) and what they have done in the past, I can do at home.

I sat in the chair with him until a little after midnight, Jeremy brought the pac-n-play to our room and Brayden slept the remainder of the night in it. He had a few seizures in the middle of the night and couple more vomit spells so needless to say it was a rough night (Brayden has not slept in our room for an entire night since he was a newborn, so you know we were freaked out).












I talked with the GI specialist this morning and we are going in tomorrow morning at 8:00 a.m. to see him. I am not completely confident with the path that this GI doctor seems to be heading, not sure if the procedure he may be suggesting is really an answer, just not sure...I have been praying about it constantly today between all of my other thoughts and running around. We will see what the doctor says tomorrow.

Please pray for him, for the doctor, for the next steps. The not knowing what to do or how to make him better, is overwhelming.

Change in Seizures?

One of Brayden's many appointments this week was with his neurologist. I explained to the doctor our concern with the change of Brayden's seizures over the past few months.

Until recently Brayden's typical seizure would be to turn his head to the side, one side of his body would be tense/tight and the other side would twitch. Now most of his seizures are his entire body. Imagine the gymnasts on the rings. They do something called the iron cross. Brayden's seizure look similar. His arms and legs completely extend and sometimes he lifts he head up so much that it looks like he is doing a stomach crunch too. These seizures look terrible. He has them 3-4 times a day. His breathing does change during this seizure, he grunts seeming like his breathing is a bit labored.

Brayden actually did the iron cross seizure (as Jeremy and I call them) in the neurologist office.

Here is the concern...

Since two months old he was diagnosed with partial complex seizures. Meaning the seizure was coming from only one part of the brain. The doctors concluded this by a few EEGs as well as seeing his seizures (I videotaped many of them). This new looking seizure is looking more like a generalized seizure since his entire body is involved, thus the seizure is happening throughout the brain. According to the neurologist this is not uncommon to change from partial complex to generalized.

We are awaiting an EEG on May 20. EEGs are a stressful process. It is not painful. The technician must put a couple dozen electrodes on Brayden's head and the electrodes must stay in place...hard to make that happen with the wiggly child.

If they find that his seizures are looking more like a generalized seizure then it should just be a medication change.

Here is where the neurologist scared me a bit...

The seizure is involving his entire body. This could be a potential for breathing problems. Brayden has yet to have breathing problems with his seizures (although a good temper tantrum of his and he can make his lips purple). There is always a warning with breathing problems and seizures, especially if the seizure last too long. This is first time we got a real warning about Brayden's ability to breath during a seizure.

I am a bit more on edge about his seizures now.

Then last night Brayden had a bad series of seizures, we gave him the Diastat (his rectal dose of medication, similar to Ativan). We use this in case of seizures that seem out of control or too many seizures in a time period; if for some reason his daily seizure medications do not do the trick.

I checked on him several times after putting him to bed. He slept fine...me, not so much.

Today, Brayden was not acting himself. Possibly because of having some bad seizures the day before or a hangover from the Diastat. Brayden had a not so good seizure this morning and then after nap time he had a long seizure...too long for my comfort. After snuggling in his daddy's arms for a bit, he is sleeping peacefully now.

I am hoping that the EEG will provide some answers so the neurologist can adjust his medications. Seizures are not fun.

Round 2

Since Brayden is two years old, we are doing the rounds of all of his doctors and some new ones. The midst of all the check ups, we are having assessments for special ed preschool in the fall.
Here is his list:

• GI specialist - seeing him more than I want due to Brayden's vomiting coming back
• GI NP (you would think we could just do one GI trip but not the case) - to monitor Brayden's weight and feeds
• Neurologist - to assess seizures and next steps thus the MRI, EEG and some blood work
• MRI - his only other MRI was at 3 months old
• EEG - seem to think that since he is growing, his brain only mm but every mm counts. He may be having a new kind of seizure
• Pediatrician for the wonderful 2 year check up and shots
• Weigh-ins with pediatrician since we are changing around his calories, he needs to gain weight
• Opthamologist - yes he is still blind as one doctor so kindly put it
• Cardiologist - Brayden only has a very small thing that just needs to be checked every once in awhile...nothing to worry about
• Orthopedist - new to list but need to see because Brayden is not weight bearing

For school

• Occupational and Physical Therapy assessment
• Vision Assessment
• School meeting for planning, IEPs - I have no idea how many of these will happen

Oh yes, we are attempting to do all of this in a month or so. We still have Brayden's "regular" appointments. Carter and Luke's school schedule and sports.

Did I mention we live a bit far from civilization so all of these appointments tend to be a full day adventure? And I am sure that I am forgetting some doctor, some child, some appointment, some event along the way...sorry in advance if it was you.

If only I liked Red Bull...

It is his 2nd birthday - part 2

I figured I better finish off the birthday post before it is too far in the past.

As I mentioned before birthdays seem to be a time of celebration and reflection. Now I am reflecting on the past two years...

I have to say when it comes to Brayden, I have no idea what to expect. Things that I thought would happen in the past couple of years, have not. Things that I thought would never happen, have. This post is hard to write. Hard to admit that I am somewhat disappointed, still shell-shocked and hurting in the midst of the happiness and celebration of Brayden.

I genuinely thought Brayden's development would be further along by the time he was two years old. Yet I felt like I did not really have any concrete expectations for him. Every baby book out there tells us that the most important development happens within the baby's first two years (I know better after talking to other moms of children with severe disabilities). Well here we are at two years and Brayden has his own developmental chart that the steps are so minuscule that it sometimes feels hard to see.

I fully acknowledge and celebrate every little thing that he does but it is hard sometimes not to grieve the things that he cannot do, the things that he misses out on.

His vision is so impaired. Oh how fun it is to see pictures in a story book, the beautiful flowers popping up in spring and mommy smiling so big at him that my face could crack. He cannot eat, at least by mouth. How much fun it is to eat! The taste of his birthday cake or even just baby food. He does not have much control over his body. He desperately wants to sit upright like a big boy but the task is more therapy for him than fun. It exhausts him. We have boxes of baby toys that require interaction from the baby, very few of them can even work for Brayden. Playing is fun, a bonding experience for him with his brothers and family. Finding the right way to play with him is challenging.

We really do not spend our days thinking about the things that he cannot do but as he gets older those things become more apparent.

From year 1 to 2, I must admit has been long. Brayden's great-grandmother said "Oh my, I cannot believe he is two. This year has flown by!" My response, "You have not been in our house. This has been a long year." Shortly after Brayden turned one, we started down the path of feeding tubes. We continue to struggle with the his tummy, eating and gaining weight. Just in the past year, we have had a few hospital stays, 911 calls, many scopes and too many doctors. Brayden medical files just from the last year are huge for only being 2 years old. The doctors know us by first name (never seemed surprised when I call) and the pharmacist knows us when we walk in the door. Brayden's medical issues do not seem to be improving: the tummy and seizures. It feels like we have a temporary fix but not the real solution. I am not sure there is a solid answer to Brayden's medical needs.

When it came time to blow out his candles on the birthday cake, I could not help but think about birthday wishes, my wishes for him. I am not wishing for the big things like walking or talking. However I do wish to one day hear him say mama. I wish he did not have to struggle so much. I wish to take away his struggles. I wish he did not have to spend so much time with doctors. I wish he would smile more. I wish I could hear him laugh. I wish I could find that thing that would make him laugh. I wish for more inaction from him to know what is on his mind. I wish I would feel his arms around me in a big bear hug.

Despite all of these feelings, Brayden is a joy. He is in no way a burden. I love him and will do anything for him. I cannot imagine life without him. We really do live each day with happiness. These feelings, wishes and disappointments are just part of Brayden shaping our lives. It comes with the territory of being his parent. The Lord placed him in our care. The Lord sees us as equipped (with His strength and wisdom) to be the parents of Brayden. The Lord knows my wishes for Brayden. The Lord knows Brayden's struggles. He knows all about the past two years and the years that are ahead. The Lord knows.

Before I formed you in the womb I knew you, before you were born I set you apart.

Jeremiah 1:5

The Lord knows the plan for Brayden, I do not and I have to trust Him.

Trust in the Lord with all your heart,

And lean not on your own understanding;

In all your ways acknowledge Him,

And He shall direct your paths.

Proverbs 3:5-6

Birthday Festivities

Brayden's 2nd birthday was April 17.

On his actual birthday we were with some family for dinner. Luke was quite perplexed about the party. He thought Brayden's party should be on the day of his actual birthday. So Carter, Luke and I went to the store to pick out a cake.

This past weekend we had the party.

Could you guess the theme?

Turtles. How did you know?

Family and a few close friends joined us on a hot April day in the 90s. We loaded up on food and fun. The kids bounced in the most adorable moonbounce.

Brayden was not too sure about all of the commotion or singing happy birthday.

We attempted a family photo at the end of the party. Everyone a bit done from the day.

And Brayden was wiped out.

This is the song that doesn't end

This is the song that doesn’t end
Yes it goes on and on my friend
Some people started singing it not knowing what it was,
And they’ll continue singing it forever just because
This is the song that doesn't end...
by Lambchop (click to experience the song)

I was just singing this song with Carter and Luke last night. I have no idea why I ever taught it to them. The song gets stuck in your head and yes it goes on and on.

Well this week I felt like Brayden was singing the same song, just his own version...with the vomiting. I thought that song had ended but not the case.

I talked with his GI specialist this afternoon. He wants us to try Prevacid with his other medications to see if it could make any difference. Also to decrease the calories in the formula for his J-tube. If this sounds familiar, you are right; we have tried this many times before and it barely took the edge off the vomiting. The doctor did not sound too optimistic about trying these but wants to try it before discussing other options. We are to give it a try through the weekend and check back in with him.

This song has to come to an end. It cannot go on and on my friend.

It's back - the vomiting

Anyone watch those old scary Poltergeist movies? And the little girl, "They're baaack!"

Well we have our own little scare...It's baaack!

The vomiting.

It is back with a vengeance. Shortly before spring break Brayden was sick, everyone else in the house got sick. Everyone got better, including Brayden. However, his vomiting did not go away. Over the past week it has gotten progressively worse. Several times he has vomited blood, the brown old blood. Yesterday and this morning was the worst. He vomited a lot of stomach bile and blood. It burns his skin to the point of bleeding. He looks terrible (even though he is so adorable). The sides of his ears and the back of his head are raw from laying in it in his crib, even just for a moment. The corners of his mouth are red and bleeding. It has to hurt but he doesn't cry about it much.

I really thought the vomiting was a thing of the past. We are waiting to see what the doctors say. I am not sure what options are out there at this point. The last round of this we tried so many things. Ugh.

It is his 2nd Birthday! part 1

Today is Brayden's Birthday. Today he is 2 years old.

I have to break this birthday post into parts. With birthdays come a time for celebration and reflection, so this post is going to be about the celebration of Brayden's life. All the good things.

Brayden is a sweet boy. Our little turtle that moves at his own pace, is two years old. He is taking his time, revealing what is under his shell little by little...

Brayden's life has been a bit hectic but we are starting to get the hang of things. Here is a little about our little turtle.

Brayden's life:

• Sleeps well and always has, although napping has never been part of his day. When he feels the need to sleep during the day he tends to take a cat nap no matter where he is that moment. When in bed he finds the exact same spot in his crib, there is even a dent in the crib bumper where he places his head. After being on vacation last week and being in a pac-n-play, the moment we got home I put him in his crib. I went to the bathroom to get his medicines ready and when I came back he was already in his place sound asleep.


• Eating is not much a part of his life. The past month we were able to give him tastes of some baby food and he could not get enough. He loved it! However the doctor said enough. Since the vomiting has returned the baby food has not. He is still feed by his J-tube of his G-J tube for about 16-18 hours a day.


• Playing is something he is learning to do. Brayden loves to be around other people. He likes the noise of his brothers playing in the same room. Brayden enjoys looking at objects that sparkly or reflective. He prefers things that are red or pink. His looking lasts about 3-5 seconds, takes a break and then tries to find it again. The toys he enjoys the most are ones that have simple lights and/or sound. How do we know what he likes? His eyes get bigger or he gets still, trying to make sense of it, or he tries to play with it by moving his arms to try and find it. Every once is a while you can see his little hand stroking whatever toy maybe in his lap.


• Brayden loves music. In particular he likes some of the boy's pirate songs (courtesy of a friends birthday party). When these songs play in the car, he makes some noises like he is singing along. Every evening for bedtime, he listens to a Baby Einstein CD. This CD travels with us and goes for hospital stays for a familiar sound.


• Speaking of noises...Brayden is able to vocalize his needs. He cries when uncomfortable or overwhelmed. He fusses when he is grouchy. He talks, in his own way, when he feels the need. His talking sounds like little lion roars.


• Cuddling is his favorite past time these days. A year ago, he was not easy to hold. He was so tight and would fight being held. Now he calls out, in a fake cry, when he wants to be held. Every evening Jeremy comes home from work, walks in the door and Brayden cries. Why does Brayden cry? He knows that daddy will pick him up and they will cuddle on the couch. Problem; then Brayden fusses when put into bed because he was much happier in his daddy's arms.


• Movement is something that Brayden is discovering. He cannot sit up or hold his head. His body operates on two separate sides (because of the ACC). Some how he is still able to wiggle into his spot in the crib. He kicks his legs when excited, mad or stinky. Just in the past couple of weeks he has really been going crazy with his arms. So much so that one time I thought it was a seizure. He was just moving and shaking so much.


• He is left sided. What? Brayden's left side works best for him. He moves and uses his left hand much more than his right. He always leans to his left. He works around whatever he is sitting in to be able to lean to his left. He kicks more with his left leg.


• Bath time is always a highlight in Brayden's day. He loves the bath. If he gets really relaxed then he may fall asleep in the tub. For bathing we have a special chair and put a pad on top for extra comfort! But when the bath is over, he is not happy. Take him out of the tub and he is mad. Getting dressed is not something he enjoys either (you would think he might get used to it since it happens all the time!).


• Brayden is preparing for special education preschool in the fall. So this year of being a 2 year old will come with some big changes for him.

Brayden is a gift from the Lord.

He is no longer a baby but a toddler. A toddler on his own path. A path that only the Lord knows.

Happy Birthday!

The Rest of the Story

Remember Paul Harvey's "And now you know...the rest of the story."

Well here is the rest of the story from our Disney trip...

The previous post on this blog and our family blog was all about the fun. This a bit more real.

I have to say that my expectations for the trip were pretty low. I did not know how much Brayden could handle and for that matter how much the other two boys could handle. Six days of parks, lots of walking and not enough sleep. That could be a recipe for a serious case of grouchy and meltdowns. Each child did amazing, they were fantastic including Brayden. He even gave us a few smiles during the week.

Brayden was still vomiting a couple of times a day and we are still not sure why but for the most part it seemed manageable. We just carried more rags with us. He seemed fine after expelling whatever was bothering him (stomach bile and saliva) so we were still at the parks and on the rides!

As I mentioned before, we were able to get special handicap passes for Brayden and our family. This was key for us because we could be on the rides together. Many of the rides had a different entrance for the wheelchairs, sometimes it was the exit. We would wheel Brayden through the exit and many times a passer by would shout at us "HEY! This is the exit!" As if we were trying to cheat in some way past the lines. It feels very offensive to have someone in your face accusing you of trying to cut in line. Easy to ignore at first but after several times it starts to bother you. And how do you respond? Do they really want an explanation?

We quickly learned that the handicap pass was a wonderful blessing because we did not have to wait in the lines (word of advice do not go any where near Orlando during Spring Break time, it is a madhouse!). We only used the handicap pass for the rides that Brayden was actually going on. The other rides, we waited in line just like everyone else. However, I noticed that many groups did not abide by the same guidelines; handicap pass for when the handicap person was with you...others used this as a free pass for bypassing the insane lines and meanwhile the handicap grandmother was back at the hotel relaxing. It did not bother me much until the last day.

We were waiting at the handicap entrance to ride the carousel. A ride that Brayden could go on. We could wheel his chair right in and then unload him to some one's lap, park his chair until the ride was over. We were waiting our turn, watching the carousel go around. Behind us were three young moms with three little girls (none of which were handicap according to them). One mom asked if their girls could come up with our kids to watch the carousel. Of course we said yes. The carousel came to an end and we were ready to spring into action and get everyone on. Well all of a sudden one of the moms pushed right past us saying "Oh I am just getting my daughter" but she went in and called in her friends. The attendant stopped her and she showed him their passes. Then she called he friends through, completely going past us. Meanwhile the carousel is filling up from the regular line. The attendant let us in and I quickly found a horse for Carter and Luke. I looked around for Jeremy and Brayden, I circled around the entire carousel. I realized that Jeremy and Brayden were on the outside. There was not enough time to load Brayden and there was no room left. Boy was I mad, I could not believe that mom pushed her way through us. All of her group was on the ride and ours was split. Her rudeness and complete lack of consideration made my blood boil. There was only a handful of rides that our entire family could ride together and this was one. She pushed right past our children, Brayden in his wheelchair and seemed to have no qualms about it. I wanted to say something but they exited the ride on the opposite side.

After the carousel we headed to the tea cups. Once again, we head to the handicap entrance. There was a short line. Across from our line was another group of moms resting on a bench. They decided to have a conversation about if it is fair for us to be in a different line and get on the rides without waiting in the lines. These women stared and stared at Brayden.

The special handicap lines were nice despite the inconsiderate people. We had the opportunity to talk with other families who had children in a wheelchair. We talked to a couple of people on their Make A Wish. And of course it was nice to not wait in all of the lines and ride together.

Now on to our big Brayden adventure for the week...

A week or so before the trip I noticed Brayden's feeding pump was making a strange noise, kind of like a creaking door when the pump was running. It was still working so I did not think much about it. The first few days in Orlando the feeding pump was not pushing any liquids through the line, not the formula or water. After some tweaking the pump would end up working. Then came Thursday morning, our day for Sea World, a place that Carter has been waiting his whole life to go (that and Africa). We were getting ready for the day in our room. I was packing up Brayden's feeding equipment and I could not get the pump to work. I tried and tried. Turned it off and on, tried new bags...nothing was working. I panicked and in a not so mature moment threw some bags across the room out of frustration. The pump was done.

We immediately called the medical equipment company. They had an office in Orlando! Our local office in Alexandria had the order processed and ready to go in a matter of 15 minutes. A new pump and bags would be delivered shortly! Huge sigh of relief. The feeding pump is the only way that Brayden gets his food and water. We try to give him things in to his stomach but that does not go well. The J-tube part of his tube requires a very, very slow drip and it is close to impossible for us to feed him without the feeding pump.

Well a few hours past, no new pump. Our local office in VA called to check. Nothing. I finally called an office in FL, spoke to three offices and countless automated systems. Nothing. Where is the feeding pump? At this point it is 3:00 p.m. The last food that Brayden received was 7:00 a.m. We were pushing him limits. We were worried, it was after 3:00, most offices close at 5:00 p.m. Jeremy got on the phone and did some "gentle" persuasion with the Orlando distribution office. All of this taking place in the middle of Sea World while trying to have fun with the boys. Jeremy convinced the office to let us pick up the pump at their location because if we did not get it soon, we were going to the ER for Brayden. The Sea World day was cut short (Carter still had a good time). Then we rushed off to the other side of Orlando to pick up the pump. We arrived at 4:54, their office closed at 5:00. They handed us a new pump and supplies. Huge sigh of relief. Thank you Lord.

A few bumps in the road but still an amazing time. We are so grateful to even be able to travel to such a wonderful place. Grateful that Brayden withstood all that was thrown at him from rides to lack of food. The Lord protects us and provides for us. For that we are always grateful.

And that is the rest of the story.

Where wishes come true

We are back from our first trip to Disney World. The car ride was long but everyone did great. Each day was magical and more fun than we expected.

My concern before going to Florida was for us to do things as a family. Amazingly, Brayden was able to join us on many rides. We were given a special handicap pass. This pass allowed us to go to a different entrance with no line and get right on the ride. We were a bit worried that the rides would be to much stimulation for Brayden but he seemed to do fine. Although there was no spinning on the tea cups.

Brayden got his first official real haircut in the Disney World's Barber Shop. Brayden's hair has only been cut by Jeremy and me attempting to hold him, let just say it is not fun. Jeremy entered the barber shop and asked if they would be up for cutting Brayden's hair. They were up for the challenge. Jeremy held Brayden and off the lady went! Brayden screamed and used every bit of his strength to make it stop but they finished. The haircut was great, even and with a little fade in the back. As part of the first haircut he received a little ear hat and the back says first haircut.

We had an amazing time. Brayden did really well. He rarely fussed and really did just go along for the ride. For more photos of the family trip check out our family blog.

Packing up and Heading out

Heading out - Brayden's snot. He is doing better. He sounds better. However the drainage is still an issue for him, still causing him to vomit. The vomit has been burning his skin (something we have dealt with in the past). This morning his was crying in pain from his skin burning. Thankfully we already have the burn cream and that seems to provide some comfort.

Packing up and heading out - we are leaving for Disney World. Who knew this day would actually come?! The boys have been counting down the days...not so patiently. I finally made a countdown to Disney calendar. This trip will be memory making. We are driving to Florida. Please pray for our safe travels and patience for everyone in the car! We are staying at my parents timeshare in Orlando.

I have been in full on planning mode this week. I have lists all over the house, making sure I do not forget a thing. I have talked to anyone and everyone about their trips to Disney. I talked to a mom who has a son in wheelchair about how we can get the handicap accessible pass for Brayden.

I know that going on rides is not something that will thrill Brayden (although he does enjoy elevators, the older the better), however this is a family vacation. I want to do things as a family. So many times, Jeremy and I split up. One of us with Carter and Luke and one waiting with Brayden. I want us to experience as much as we can together.

Any Disney tips would be greatly appreciated as well as prayer for the trip!

Still has the yucks

Brayden still has some serious yucks. I know yuck is not a sophisticated medical term but it best describes Brayden at this moment.

He has lots of snot...tons of snot. It is draining and draining right down his throat. Since sitting up right or even being on his stomach is not much of an option for him. All of the draining is causing him to cough. A cough so hard that it turns into a vomit. When he vomits it is hard for him to get it under control. It is so violent and looks painful. The vomit is mostly the drainage, mixed with stomach bile and some drops of blood (ok that might have been too much information).

Brayden is now on some medication, the nebulizer and we are using that oh so wonderful nose sucking device (which every child loves...not really).

Even a bad cold is harder for him than my other boys. They can sit up, sleep on their side or back, blow their nose, tell me what I can do to help...

When is it too sick?

The past week has not been fun in our house. Everyone came down with some sort of bug. It felt like that bug was never going to leave. I am happy to announce that the bug is on its way out! But not without some drama.

As I mentioned in a previous post, Brayden was the first one sick. He got better, then Luke and then Carter. I thought Brayden was in the clear...

Think again.

On Saturday afternoon and evening, Brayden was out of it. Very out of it. Awake but as lethargic as someone could be and still be awake. It kind of creeped me out a bit. After some good daddy snuggle time watching college basketball, I scooped up Brayden to get ready for bed. Before I made it to his room, he started to vomit...in a very violent way. Remember, he still does not get food in his tummy so he was vomiting bile and it burns.

After he settled down (I had not), we put him in bed. Then Sunday morning I found him laying in vomit. Oh yes, bloody vomit. Can you feel my heart beating faster?! I stripped him down to get ready for a bath and checked his temperature. It read 102.5. I checked it again and again. Each time reading about the same. That is a high temp for Brayden whose normal temperature is around 97.

I immediately put him in the bath and called the doctor. I was some what preparing for a trip to the ER but really hoping we did not get to that point.

I was talking with the doctor about managing him at home and that became the plan. Some motrin, pedialyte and lots of loving.

Here is what I struggle with about Brayden...I have no idea what is ok and not ok for him being sick. When is it too much? What can his compromised body handle? What are the signs that something is really wrong? Will I know? Basically do I panic or not. My other two boys, I know what to do for them. They can tell me what is wrong or I can read their signs. Brayden, not so much. High temperatures, not good. Vomiting blood, not good. Extremely lethargic, not good. But what to do? Can I really manage things at home?

The remainder of the day and today Brayden is doing much better. His fever has gone down. He is congested and that is not comfortable when most of your life is on your back but we are able to do some nebulizer treatments and still giving him motrin.

Thankfully it seems as though the bug is finally leaving our house.

During bedtime prayers last night, Carter prayed for Brayden to feel better because he was tired of it.

Mommy is too.

A day for Seizures

Today in Washington DC, there is the National Epilepsy Walk.

Living most of my life around Washington DC, I rarely pay attention to the happenings of the town. There are many walks, races, rallies, etc. However this walk caught my attention on the local news this week.

Today is about Epilepsy. Brayden has seizures. It is one of the many things that describes Brayden's medical history. Brayden has partial complex seizures. Seizures are a part of our daily life. Seizures effect so many people.

What exactly is a Epilepsy?

Epilepsy is a neurological condition that makes people susceptible to seizures. A seizure is a change in sensation, awareness, or behavior brought about by a brief electrical disturbance in the brain.
Seizures vary from a momentary disruption of the senses, to short periods of unconsciousness or staring spells, to convulsions. Some people have just one type of seizure. Others have more than one type.
Although they look different, all seizures are caused by the same thing: a sudden change in how the cells of the brain send electrical signals to each other.

I have asked around what seizures may feel like, since Brayden cannot tell me. Mostly I hear that they do not hurt. From stories of others, they tell me that coming out of a seizure can be confusing, like you are lost for a moment and then you are trying to get your bearings again.

I do not know what a seizure feels like. I do know what it feels like to watch one.

It feels like time moves in slow motion.

I desperately want to shake him out of it. It can be a scary thing. Standing there waiting...waiting for him to come back to you.

We track Brayden's seizures. From the moment he came home with us, I documented everything about his seizures. We count how long the seizures are, when they happen, Brayden's temperament, sleep, sickness, weather, etc. Anything to find a pattern. Something to give us a clue about his seizures.

His seizures seem to be ever changing. He is growing and his seizures are changing. We videotape the seizures to document and present to the neurologist. We want the doctor to understand exactly what we are seeing at home.

Brayden's seizures are somewhat controlled by medication. Brayden is currently on Keppra and Topamax. At this point, it has been the least amount of daily seizures that we have seen in a long time.

Seizures are a part of our life. The Epilepsy Foundation has a tag line, "not another moment lost to seizures." I could not agree more.

I got a phone call from a friend this week. Her children have a medical condition that is degenerative. The doctors told her that her daughter could start having seizures soon. Her phone call to me was asking about some odd movement and a brief moment that her daughter had in the middle of the night. I was saddened to share with her that it sounded like a seizure. It sounded like something I would say to describe one of Brayden's. She had talked with the doctor in the middle of the night and that is what the doctor said. Her daughter had a seizure.

Epilepsy does not only effect people with severe medical issues. Epilepsy effects many people, almost 3,000,000 Americans.

Oh and despite what happens in the movies, people cannot swallow their tongues while having a seizure...it is impossible.

Fever or not to Fever...that is the question

I have been offline for most of the week because some bug has hit our house. Starting last Saturday, Brayden screamed for three days straight. This is really not his M.O. so I was not quite sure what to do. He had a day with lots of seizures. This could be a tell tale sign of getting sick or growing or tired or who knows what else. I took his temperature several times throughout the three days...no fever. By the third day, Monday, we headed to the pediatrician.

Have you ever taken your child into the doctor and they seem to show no signs of being sick once you are finally in the office? Your child was sick and miserable at home and some how is not once the doctor sees them!

Thankfully that was not the case with Brayden. Oh he screamed in the pediatrician office. Screamed and screamed. So much that two families decided to sit in the hall rather than listen to him in the waiting room (ask me how I felt about their attitude and how it helped my attitude!).

After being examined, the conclusion was that Brayden may have hand, foot and mouth disease because of some sores in his mouth. Not too bad but very contagious. Brayden was extremely miserable so the doctors gave him some Tylenol with Codeine. That helped. It helped a lot.

The following day he was doing much better. But then...

Luke, the middle child, came down with the fever accompanied with some vomiting. Oh fun!

A couple of days later, Carter, the oldest, came down with a fever.

We were back at the pediatricians office today. Luke and Carter have some virus that we need to wait out.

We never get sick and we are not handling it well. Jeremy and I have been under the weather too. I got my first sinus infection that brought on my first case of laryngitis. The last time Carter was sick was a couple of years ago. And I cannot remember for Luke, so it has been a while. Brayden has never actually been sick before. I guess this can be one of his firsts. However with him being sick, it has brought up the question about regulation of his body temperature. He does not show a fever when he is sick? No one has answer to that question.

A fever is never a good thing but as a mom it is a great indicator that your child is ill. You can do things for a fever. A fever is a tell tale sign for a sick child. Once again Brayden leaves us guessing. Fever or not to fever...that is the question.

Try to Understand

I was flipping through a magazine this past week. I have not really been reading books lately, it takes too much mental effort that I am not up for right now. So instead I flip through magazines. I love reading the question and answer sections.

In this particular magazine, I noticed a question that kind of made my blood boil a bit. It was entitled Pet Peeve. Someone wrote in about screaming kids. She was very bothered by screaming kids while she was shopping. This women wondered if she was right to approach a mom of a screaming kid and say something about it.

Seriously! WHAT?!

Any mom knows that your child screaming in the store is not an enjoyable experience but it happens and it happens to the best parents. And if someone approached me at the store about getting my screaming child under control...do they really think that would help my situation?!

Try to understand. Please.

So this leads me up to my adventure in Walmart. Brayden was in his KidKart and I was pushing him around loading up his wheelchair with the things I needed (borderline tipping it because I loaded it down with too much stuff). Several times in the store I came across a little old lady who was riding around in a store scooter. Oh she was not nice, she was taking out anyone who was remotely in her way and exchanging not kind words. I did my best to avoid her. Well guess what happened...I ended up in line with her. I did my best not to make eye contact or do anything to provoke her. I could feel her looking at me and then Brayden.

I am thinking, please do not pick on Brayden. That will bring out my mother bear side.

She grabbed Brayden's hand and proceeded to scold me about taking care of my child. Brayden's hands were purple. The women gave me a quick but harsh lecture about keeping my child warm and if I was a responsible parent then he would be warm enough. We can't have a baby with cold hands!

I was flustered and did not say anything. Which is probably a good thing because what would have come out...well not good.

Depending on the day, Brayden's hands and feet are purple or glowing red. He does not have the best body temperature control. He hands may be purple but it happens without reason. Or his hands may be red from his body overcompensating to keep warm. This just happens. I am not an irresponsible parent who allows my child to be cold.

There was no way for this woman to understand.

A day later I had the privilege of joining two moms for dinner (Brayden tagged along and doesn't mind because he is a ladies man). These moms are wonderful. Both have children with special needs and very serious medical conditions. They are so understanding and have such bright spirits. They are able to laugh at the situations and cry. Being a mom to a child with huge medical issues is not an easy task. It was a wonderful evening. We talked about sending our little ones to school (I need some encouragement for that), insurance frustrations, funny stories, struggles, diapers, doctors, cheesecake...

It was nice to be understood. Understood by Laura and Shannon.

All about the numbers

On Friday we were once again at Children's in DC.

The numbers we are watching - Brayden's weight. More calories in less time.

Brayden's weight remains that same. Not losing, not gaining. He obviously needs to gain weight. Thankfully no one (yet) has mentioned that lovely "failure to thrive" label. Seriously doctors...that label is terrible.

Over the past few months Brayden has been hooked up to his feeding pump for about 20 hours a day. 20 hours is not fun. It makes his life a little bit more difficult. To be hooked up to a machine for 20 hours, how could that be fun? The pump gives him 46 ml per hour. That is only 1.5 ounces per hour. And that is slow.

We have decorated his feeding contraption to add a little excitement. Some fun tinsel...Brayden likes the shiny. A little animal that plays music...Brayden likes the music.

Back to Children's; we meet with the nurse practitioner in the GI department. She handles only special needs patients. We will be seeing her for maintenance with Brayden's G-J tube. She is in full communication with Brayden's GI doctor. Their plan is to have Brayden increase his calories and the same time decrease the time for him to be hooked up to the feeding pump. We will be making his formula a bit more concentrated and increasing the flow per hour.

Brayden will be doing some quick weigh-ins with his pediatrician, showing weight gain and hopefully tolerating the increasing. Over the next little bit we are going to be working from 20 hours to 16 hours. If Brayden handles this well then we could move to 14 hours! That feels life changing. The less time he is hooked up the better.

The GI team does not consider Brayden to be out of the woods with the vomiting (a distant memory for us at this point). It has been over 4 months since the vomiting stopped. They want him to gain weight and do well with the increasing of calories and flow rate before we are able to even consider giving him food of any kind in his tummy/by mouth.

The doctor did give us permission to give Brayden tastes of food. Once a day for almost two weeks Brayden has had 2 tablespoons of baby food; sweet potatoes, squash and pears. And oh is he loving it. Amazingly he is handling the spoon pretty well...a far cry from where he was a year ago and not having anything in his mouth other than a toothbrush for 8+ months.

Oh how I wish we could feed him more. One of these days...

Transition to Special Ed

Brayden will be attending preschool in the fall.

What!?

That is correct. Brayden will be attending preschool in the fall.

If I tell myself that several times a day then maybe...just maybe I will be ready for him to go when the time comes.

Today was our first of many meetings transitioning Brayden from the Early Intervention program to Special Education with the public schools. Today's meeting was pretty simple; an explanation of the process and paperwork to sign. Our county's Early Intervention program is amazing. Brayden's current therapists are assisting with the transition to school and attend the meetings.

Preschool? Why so early? He is just a baby right!?

Brayden will be two years old next month! If we start the preschool transition now then his early intervention services can help us facilitate the process (this is a huge help for us and probably does not make much sense to anyone other than parents who have gone through a similar process).

Special Education Preschool is much different than regular preschool...

• Brayden will be riding a special bus (I get choked up even thinking about that already and I will be following that bus for a while if not driving him). We can wheel him right on the bus in his KidKart.
• Brayden will be attending an elementary school that is equipped with a special education preschool.
• The classroom will have other children with special needs.
• Brayden will more than likely receive physical therapy, occupational therapy, vision,... as part of school.
• Brayden will more than likely attend just a few days a week. The amount of days and time will be determined at a future meeting.
• Jeremy and I will attend many meetings for transition, eligibility, IEPs...
• Lots of paperwork.
• And tons more of things we will come to learn.

What do I think of it all?

I am not sure yet. I am pretty sure Brayden will enjoy school. He is social and enjoys being around people. He prefers to be around people. I, on the other hand, prefer him to be around me! I get overwhelmed thinking about sending him to a new place, with new people and new noises to try and process. His world is so small, only involving a few places and not a lot of people. Sending him to school is completely new, in every way.

What does Brayden think of it all?

Oh he slept through the entire meeting...snoring.

Looking something like this:

They call it puppy love

Our new puppy, Gander, arrived yesterday.

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After a long afternoon of running outside with every boy on the block, she was tired. We thought it would be a great time to introduce her to Brayden. The dog was mello.

We laid the puppy and Brayden on the floor next to each other.

The puppy was so sweet to Brayden, immediately taking to him and resting her head oh so gently on him. It was like she knew all about him.

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And ended up falling asleep with her head on him.

Out with the Old, In with the New

Let's start with this past weekend.

Jeremy was bathing Brayden and mentioned that his G-J tube seemed very loose. As I was dressing him, after the bath, I saw a large red fleshy bump by his tube site. This is not normal nor something we have ever seen with Brayden's tubes.

I called the GI doctor on call. She asked us to fill the balloon, that holds the tube in place. We did that. It definitely made it tighter. Then she proceeded to explain that the fleshy bump we were seeing was the lining of the stomach that came out when the tube was loose and probably came out a bit. Umm...eww and do we panic?! No. We could wait and see the GI doctor sometime this week.

I called the GI office. I left a message. I waited and waited to hear something. I called again and they transferred me right to the GI doctor himself. He told us to come to Children's Hospital the following day for a contrast study to make sure the tube was properly placed and to check the bump.

We left the house this morning (myself, Brayden and Shari Jane who is Brayden's new respite care worker). Our normal 1 - 1.5 hour drive turned into over 2.5 hours. Lots of fender benders, traffic, every stoplight and even the Presidential motorcade to hold up traffic. We finally arrived and headed into the hospital.

We waited.

Brayden was an add-on so we waited. We waited almost two hours. They finally called us back.

Brayden was strapped down on the table of a Radiology room in his little hospital gown. The radiologist who works specifically with the GI department asked a few questions and then decided just to give Brayden a new tube.

I was not quite prepared for this. We have never had his G-J tube changed.

The doctor inserted a large wire into the J tube of Brayden's G-J tube, watching it on the monitor. The wire showed were the tube was placed. After small mumblings, the doctor pulled out the old G-J tube while keeping the metal wire in, using it as a guide. The old tube was dirty and the water balloon to hold it in was completely empty thus not really holding it in.

Ok, there is Brayden on a table...hole in his stomach. I guess I could poke my finger right into it...I did not.

The doctor prepped the new tube and slid it into place using the same wire. He watched it on the monitor. He filled the new water balloon, tightened up the tube and voila, Brayden has a new tube. It is so clean and sparkly. I did not realize how nasty his old one was until I saw the new one.

We are home now after a full day at Children's. Brayden is being feed using his new tube. No problem. Just another day in the life...

Take Notice

Each stage in my life…I see things differently.

I remembered when I first got engaged. I was thrilled to wear my ring. I would stare at the sparkle from the diamond. Once I had that ring, I noticed everyone else’s ring. Lots of people were engaged or married! So many different styles of rings! Who knew?! I never noticed before.

Then when I was pregnant, I saw so many pregnant women. I am sure that there were pregnant women walking around all along but I never noticed until I was there too. It seemed like every where I went I would see a pregnant woman.

Brayden entered our lives. With his medical issues, developmental delays and such, it had added an entirely new vocabulary and interests to my world. I see KidKarts that I never would have noticed before; like when we were at a fair and a group of special needs children were being pushed around in their KidKarts. I read articles that I never would have glanced at before; like an article in the Washington Post one weekend about Epilepsy. I watch more Discovery Health shows; just watched one about a child with Cerebral Palsy. I started watching those Extreme Home Makeover shows when they have a child with a disability. I see ideas about how to make a home handicap accessible.

I have a child with disabilities, specials needs or whatever you would like to call it. I had no idea that so many families had children in similar circumstances. Sure I knew that those issues were out there but I had never taken the time to notice. Just in the short time that I have been blogging, I have come across some amazing families. Their stories so touching and helpful. I come across emails, blogs, twitters about families dealing with big medical problems. I don’t just glance anymore. I stop, really read about them, really pray for them and really take notice.

I have never noticed or taken the time to notice how our body is designed. Yes I had anatomy classes, thanks to Dr. Burkholder for that. There is so much happening. It is a grand design. A design that even the best of doctors do not fully comprehend. A design that we, when we are healthy, take for granted. Do you realize how complex the brain is? Do you have any idea how complicated walking is? Or eating? I certainly did not until Brayden came into my life.

I never really noticed how much the Lord has a grand design for our lives. Sure I knew it but never toke the time to think about it. He designed our bodies. These bodies that are so complicated, yet function in the most awesome way (even when things are not working properly). He designed our lives, where we live, who we are, who we know, our experiences, joys and heartaches…all designed in the most fabulous way.

God knows the grand design. He notices us. He knows us. We just need to stop and take notice of Him. We need to know Him.

Annoyed

I am annoyed.

With insurance.

An ongoing headache for me but today I am extra annoyed.

Insurance. We have always had insurance. I have never really given it much thought. I go to the doctor hand over my card and copay then I am on my way. That is until Brayden. I spend more time on the phone and online trying to understand and make sure that Brayden is covered. Since the time that Brayden was born Jeremy’s office has changed insurance programs several times. Ugh! Every time it is difficult to switch all of Brayden’s things over. A couple of times that switching brought me to tears. The mention of switching insurance makes my stomach in knots.

Last year we were on one program. All seemed to be going well until it came time for Brayden’s therapies. The insurance company said that each insured gets 90 days of physical/occupational therapy. That is therapy has to happen within 90 days…three months. Not 90 days of therapy. His therapy had to happen within 90 days, start to finish. Brayden obviously needs more than 3 months of therapy. We argued that point. Got a doctor’s note/prescription for the needed therapy, thought we were covered. Several months later the insurance company is saying that we were denied the therapy that happened outside those three months! Back to discussing/arguing with the insurance company over something that happened last spring.

Now we are on a HSA insurance plan. Some doctors ask for copays, some do not. I don’t understand. We have reached our limit only a couple of months on the plan. After some discussion with the insurance company last night, I realized that Brayden can have up to $2000 of physical/occupational therapy. Umm…sounds good at the start but we are half way through that limit and it is only February.

So what do we do? Brayden needs therapy. Do we deny him services because insurance does not cover? We will argue for more but it is hard. The insurance company needs some serious convincing. We cannot pay for therapy out of pocket…it is way too costly. Brayden has other expenses that insurance does not cover. Do we cut back in therapy? I was hoping to add feeding therapy back into the mix but that might not be possible.

Who knows what the insurance companies will tell us. I have spent too much time with them on the phone today.

I am working on getting letters of medical necessity to appeal.

Ugh, insurance. It is great when it works and a pain when it does not.

I am annoyed.