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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