Tuesday, March 30, 2010

A connection

Yesterday I had lunch with a very special lady. She has a teenage daughter that has special needs; she has dealt with seizures, major seizures.

Through a series of events and conversations, one can only conclude that this meeting was a gift from God. See this woman I meet with, is a pastor's wife of a very large church in our area and I am sure her schedule is very protected. On very short notice she was able to meet me for lunch.

I expected myself to feel intimidated and/or nervous to talk with her. But the moment we sat down, the conversation took off. We talked for almost an hour before we realized we actually needed to order our food. We shared many stories, found humor in some of the crazy circumstances that our children have brought us, shared struggles, how to deal not only with our special needs child but our other children as well, and much more.

Her daughter has gone without a diagnosis for most of her life and had so many seizures that were life altering. She tried the ketogenic diet. I asked questions about the diet, seizure treatments, doctors, tests, etc.

This lunch with this woman was just what I needed. I felt completely understood, without explanation and I felt comfort without the pity sympathy. I appreciate her time with me more than I could put into words. I could have sat and talked with her for many more hours.

Friday, March 26, 2010

We have oxygen

A delivery for Brayden today...some oxygen.

Oxygen is now at our home. It is to be used when Brayden goes into his big seizures. The past several ER visits, his O2 stats have been too low and he has been put on oxygen. His seizures have been causing problems, thankfully only once or twice a month.

We live in Waterford about 20 minutes (no traffic) from the local hospital. The local EMTs always arrive quickly but we have to wait for a medic to arrive which comes from one of two neighboring towns. By the time we have to call 911 and get moving in the ambulance is at least 20-30 minutes, then a drive to hospital...that is a long time.

So now we have oxygen and a pulse oximeter for our use, along with all of the attachments. Thankfully Brayden's room has a walk-n closet to store all of these things but it is looking more like a storage closet for a hospital.

Wednesday, March 24, 2010


Brayden was fitted today for his first pair of AFOs. A cast is created for each foot in order to create the proper mold.

The AFOs will not be used on a day-to-day basis, thankfully he does not need them for that kind of assistance. He will use them when attempting a stander. To give him stability in his feet and ankles.

I have to tell you that getting the AFOs is a little difficult for me. Not because of the process of having him fitted in a cast, cut out of them or coming back to get them later. It is because they are so stereotypical of a handicap kid. The handicap kid with leg braces. Yes, I know that this is being totally superficial...I am aware. But the look of them...well not attractive. Although you can order them in fancy patterns and colors (we just ordered blue).

It just seems to add to the whole disability thing in a very visual way.
Now we have to get him some shoes that his chubby feet fit into with the AFOs and possibly some cool AFOs sock (knee socks). He will receive his AFOs in about two weeks. I am sure he will be thrilled.
(sorry the pictures are bad, it was with my phone)

Tuesday, March 23, 2010

Brayden's changes

I have not had much of a chance to sit down at my computer for several days. Most of my time has been on the phone.

First for scheduling. Brayden is officially scheduled to start the ketogenic diet. He will be admitted to Children's April 5th. He will be there for at least 4 days. He will be closely monitored not only to start this diet but also because of his unexplainable G-I history/problems. He will be doing this diet through his G-J tube, and I have yet to find parents that have done this diet via j-tube (so if you know anyone, pass them my way). We are working to get things set up for his life on the keto diet.

Secondly, Brayden's waiver. Boy, I have been on the phone way too much about this. In Virginia, Brayden is currently on something called the EDCD waiver. He got on this waiver before he even had a feeding tube and was only on a few medications. Since that time, Brayden's medical needs have escalated. He waiver is being re-evaluated, adjusted, whatever... What all of this means is that Brayden will no longer have an attendant, he will receive nursing care. After coming home from the hospital, Brayden will have two nurses that will be at our home to assist with his care.

The transition of things two things has been very time consuming. I have talked to many people at VA DMAS, local case worker, local department of health, the doctors, several nursing agencies, the hospital and more. I talked to all of them several times, collected lots of paper work and had a few meetings. All the while trying to navigate these changes with the least amount of problems.

To recap, Brayden starts the ketogenic diet and will be receiving full time nursing care at home.

Wednesday, March 17, 2010

Green Kisses

Happy St. Patrick's Day.

Brayden came home with his St. Patrick's Day art project. Painted by him.

Leave him a St. Patrick's Day kiss in the comments (cause you love his t-shirt and those kissable cheeks)!

Tuesday, March 16, 2010

Change the tube

Brayden went in today for a tube change. Out with the old G-J (which I think actually smelled funky this time) and in with the new G-J (which is so shiny). The tube change requires a trip to the hospital for time in radiology. Since the tube must be placed into the intestine properly, die and a wire is used to insure proper placement.

Changing the G-J tube is something that we do many times a year. Brayden is always adorable in his little hospital gown. The hard part of changing the tube is pulling out the old tube. The tube almost becomes a part of his body so the radiologist needs to really yank on the tube to pull it out. Did I mention Brayden is awake for this on the radiology table? Sometimes this causes so much discomfort for Brayden that he screams and no sound comes out...not fun and not fun to watch. Can you imagine the feeling of having a long tube yanked from your body, through the intestine, stomach and out a small hole in the muscle and skin? I get shivers thinking about it. Thankfully it does not take too long.

Brayden is just bothered by the yanking. Immediately before and after he is absolutely fine, in fact happy today, tossing around some smiles.

Sunday, March 14, 2010

School is so beneficial

I spend my Sunday nights getting ready for the school week ahead. It takes a lot of get three boys ready for their school week...each in a different school and all of their activities.

Carter is at our local public school in 1st grade. Luke at a church preschool about 20 minutes away. Brayden at a public elementary school about 15 minutes away; he is in special ed preschool.

This school year has been interesting. For one thing it has affirmed my thoughts that school is extremely beneficial for children (a.k.a mommy not being the teacher). While I know that everyone needs to choose their child's educational path based upon their families needs, for me sending them to school has been a great decision.

Carter's reading and math skills have grown leaps and bounds. His teacher can get him to read some great stuff. When I read with him at home he gets frustrated. Carter has become a leader in his class and learning to choose good friends. Our rule...you do not have to play with everyone or be their friend but you have to be kind and respect them.
Luke is ridiculously ready for kindergarten. His preschool has been great. He educational skills are kindergarten ready. He is learning self control. He is a well behaved child but tends to speak his mind...whenever a thought comes...which means he talks a lot. Luke has to learn the appropriate time to talk and taking turns.

Brayden has been maturing tremendously. He tolerance for new things, they do not frazzle him. The teacher, aids and therapists do all sorts of activities with him...things that not in a million years I would try with him or even expect him to be able to participate.

Bottom line, having teachers and others adults at school has huge benefits. They expect different things from our children. They see them differently than we do as parents. They push them in a way that I could not being a mom/teacher. They have tremendous patience and many innovative ways to reach our children.

Being around other children on a regular basis has many benefits. Not only the sharing, taking turns, working together but comfort in having friends. Brayden even seems to recognize those in his class.
I am so grateful for our teachers!

Friday, March 12, 2010

Busy week

I have not blogged much this week because things have been busy.

A good busy, for the most part.

The week started with a meeting about developing a fully accessible park in our county. I have been thinking, researching, googling a million ideas. We met with a playground equipment company to help give us some ideas and hopefully direction. Still so many things to be decided to even decide if we can pull this off.

On and off throughout the week, I have been on the phone with Children's. We are now scheduled for Brayden to enter the hospital in April to start the ketogenic diet. He will be in the hospital a bit longer than typical keto kids because of his G-I history and pancreatitis...all of which will be watched closely.

Because Brayden's medical needs have changed so much in the past couple of years, the waiver that he is currently on is being re-evaluated, with the idea to update to his current medical status. This is a pain. No one seems to know the correct process. I have talked to countless people...way too much time on the phone.

Yesterday I had a meeting to discuss ideas about collaborating on a book. A book that would share three stories. Each story from a mom of a special needs child and navigating their life. I am not sure where this project is heading but it is a possibility.

Not to mention our regular activities for Carter and Luke...Brayden's appointments, etc.

Today, I will actually run to grocery store and some other errands and it happens to be the day when it is pouring down rain!

Sunday, March 7, 2010

Like my shadow

Sometimes I see a lot of it and sometimes very little but it is always with me.

I heard this phrase last week and it stuck with me.

I was out to dinner with some friends last night. We have been talking about sharing our stories and the best way to portray our lives.

One of the most important things we realized is that our life is not all about grief in dealing with a severely disabled or medically fragile child. It is not a moment that we need to "get through". It is not a challenge/adversity that we come out the other side of and feel free or without struggles.

Many of us have received books on grief, praying through the tough times, getting through the storm...all of which have their time and place. It is certainly something that is part of the process but it is not something that goes away or even runs our life. It is hard to have your child struggle with basic things like eating or motor skills. But when you child snuggles in to you, it is a moment that you would not trade for anything.

We have a very strong ebb and flow in our life. Sometimes it is heavy with grief and struggles; other times with tremendous joy. Sometimes things are really rough and other times things are calm. We miss the things that we do not have but we love the things that we do.

The sorrow and hurt can creep up when you least expect it. Sometimes I find myself consciously pushing away those thoughts. Then, at times the struggle is in the obvious, when unwanted test results come back or having your child go through yet another medical procedure. It is hard to see you child put through so much and there is not much you can do as a parent to stop it.

We appreciate the little things in a entirely new way and savor it all. This life has changed so many of us...made us better people...love a little more deeper...more reliant on our faith. Having those struggles does not mean our faith is lacking it is just part of our life moving forward.

Having a child with severe disabilities, a disease or medical problems has its struggles...for me, it is like my shadow, some days I see a lot of it and sometimes very little but it is always with me.

Thursday, March 4, 2010

Luke and Brayden

Luke asked me if he could get Brayden off the bus. I said yes. He ran outside and waited at the end of the driveway. I yelled down to him that the bus was not coming for another 10 minutes. He said that he would wait and watch so he could be right there for Brayden.

And he pushed Brayden up to the house and on to the lift in to the house. Luke told me that Brayden preferred him to do it rather than mommy.

A day later, Luke decided that he wanted to play board games. I told him that I could not because I had to do some things around the house. He quickly replied that he did not want to play with me but Brayden.

They played a round of Candyland and Guess Who. Luke encouraged Brayden right along, "Good job Brayden, you are winning!"

Luke is the one who most fills in for Brayden's lack of words. Sometimes proclaiming that "Brayden wants to watch a movie!", really it is what Luke wants. Brayden does not seem to mind at all and likes the attention/entertainment that Luke provides.

Tuesday, March 2, 2010

This is NOT what I expected my life to be

We all have expectations for our lives.

I mentioned that I was reading through old blog posts and emails, I realized I wrote a lot about expectations, things that were happening that I did not expect.

Here are some. I am sure that you can relate to at least a few of them.
  • I never expected to have a child with severe disabilities
  • I never expected to know this many doctors or hospitals so well
  • I never expected to have medical equipment as part of my home and daily life
  • I expected all of my children to talk, walk, hug, (eat, not by tube), etc.
  • I never expected to hurt this deeply
  • I expected myself to be a mom that could handle it all...I cannot
  • I expected to be there always for all of my children...Carter and Luke sometimes get lost in the chaos of things, even though they are understanding about it all
  • I expected my child to be able to cuddle...Brayden did not until 21 months
  • I expected to go on many vacations as a family...that left stress at home
  • I expected doctors to have answers and not be the one making major medical decisions for my child
  • I never expected to need this much help. I was a social work major in college, the idea of helping others and I am the one getting help from every direction.
  • I never expected asking for help would be so hard
  • I expected certain people in our lives to help (I learned that my expectations for them were apparently too high)
  • I expected my neighbors to be snobs (sorry gals) but thankfully I was seriously wrong
  • I expected Jeremy to feel the same as me, after all we are in this together. However things that bothered him, did not bother me. And things that bothered me did not bother him. Which turns out to be good because then we could support each other
  • I expected to know how to pray (I will have to blog about this one later)
  • I expected prayers to be answered...at least to find an end to the vomiting

I could go on and on. Clearly this is not what I expected my life to be.

Thankfully God surpasses all of our expectations and I am learning that a little more each day.

Have I let go of my expectations? I wish I could say yes but I am trying...