I almost hate to write this for fear of jinxing it, but Stephen is now 2 months seizure free. That is the longest he has gone since the big seizure in September 2009. He still has not gotten back to where he was, however I feel like part of that could be because we have gotten a bit lazy about pushing him to do very much. He isn't getting that stimulation he used to get. That, my friends, is about to change.

If any of you have stories or suggestions to share about "sensory diets" or sensory activities, I would love to hear them.

It will also be interesting to try some of these activities with Nathan (the baby). I am concerned about him because I was on bed rest for so long during his pregnancy. Not worried, just aware that there could eventually be issues.

Bad Blogger

I stink at this blogging thing. It has been two years since my last post. Stephen recently finished his last year of preschool, and will be starting Kindergarten in the fall. Yes, that's all day. I am amazed at how much he has grown up.

First Day of School & Some Great News

Well, I did it again. I put my baby on the school bus for the first day of school. The teacher said he did really well. She said he seemed much more attentive to what they were saying and doing with him. He colored a picture of a school bus. And all of this without thowing up! Yippee! This is going to be a great year for him.

Now for the great news. We went to a new Ophthamologist (special eye Dr.) for his annual follow-up. He told me that Stephen's near-sightedness was worse, but that the eyes themselves looked VERY healthy. That is apparently very unusual for kids like him. Way to go Ambrotose!

So now, we have a new prescription for glasses. Maybe if they really improve his vision, he will be more likely to keep them on. Cross our fingers. I am going to be introducing him to sandpaper letters in the hope that they might help him learn to read. The American Printing House for the Blind makes books with very large print for visually impaired people. I am going to see what I can find there as well.

We go to see the Gastrointerologist on Friday.

Letting Go

When all of your energy, time and focus are on the care of a loved one, it can take over your life and your very existence. Neglect of friends, family and even yourself are common. Despite the constant drain, you trudge on, praying for rest, but not taking it because no one else can, or would want to carry your burden. Or, so you think.

Your home has become a revolving door of outsiders coming and going almost every day of the week. Physical therapists, occupational therapists, speech therapists, vision teachers, dieticians, and case workers have become your new circle of friends. Everyone grows attatched to the newcomers. Despite the "intrusion", you are still the Queen of the hive, the one everyone relies on. Until..."she" comes.

For so long you have yearned for respite, ached for a nap, and cried out for an uninterrupted shower. This should be a glorious occaision! You finally have someone to take care of the diaper changes, the tube feedings, the crying and the vomiting (yuk). A trip to the store can be made without having to load wheelchairs, feeding pumps, coolers, and diaper bags. The laundry can be washed, the kitchen cleaned, real meals cooked, and floors (dare I say it?) swept AND mopped.

Through the front door has come both invader and savior, usurper and aide. She is... the home health nurse. You marvel at all you are able to accomplish now that so much of your time is freed up, and yet it is hard to let her handle the things you have grown so accustomed to doing. The first few days you just sit and visit. You have to get to know this person who is taking care of your precious bundle. After all, she could be an ax-murderer for all you know. Of course, you swell with pride every time she says, "You've been doing this all by yourself this whole time?"

She proves herself worthy of caring for your child, even though she isn't you. She can even be the doorman for all the the others who come to visit. She plays and interacts with him. It is actually fun to see him from another perspective. What a smile. Over time it is easier to focus on other tasks and the people in your life that have taken a back seat. Ah, what a relief.

Then one day, you start to feel the tug. Suddenly, you realize you are missing all of the little things that filled your time. The stolen kisses on the neck, the belly laughs during tickle time, and the great big squeez'em hugs don't come as often. She is getting them. You become painfully aware that he is transitioning into a new chapter of life. He is becoming less dependant on you.

With typical children, it seems to be much easier. We know that they will grow up and move out on their own someday. We do everything we can to train them to succeed in the big bad world just in case we can't be there to help them. Is it so different with a special needs child? Will I always be there to take care of him? What will he do, where will he go, and how will he deal with it if I am no longer around?

As sad as this time can be, I know it is an important one for us both. He needs to know that there are others in his life who can and will take care of him. I must learn that there is more to life and more to myself than internet research, doctor visits, dietary requirements, theraputic exercise, and GERD (yuk, again). My little boy, who wasn't even supposed to survive, is moving toward a whole new adventure. I am so proud of him.

So, I welcome the ladies who have come into our home and are sharing the precious gift and this amazing journey with us. I am so grateful for the time, love and attention you give to our entire family. May the bountiful blessings we have received flow over into your life as well.

Ulcers

The endoscopy found ulcers in his lower esophagus. A biopsy was taken, and we should get the results early next week. Everything else looks great. The doctor doesn't understand why he has ulcers in his esophagus and not in his stomach. Yet again, he is outside the "norm".

The causes and complications are rather ominous. Causes can be from reflux to H. pylori bacteria to EE. Complications range from discomfort to deterioration of the esophagus wall to cancer. I am trying to keep a positive outlook. I am going to wait until the pathology is back before making my decision on treatment. There is plenty of information on the internet about treatments including meds and herbal treatments.

For now he is taking a drug called Carafate which is supposed to coat the lining of his esophagus. It is supposed to reduce pain and help in healing. He will have to be on it for one month. After the first dose this afternoon, he was given a tube feeding of 5 oz. of Neocate chocolate (30kcal). Didn't seem to have any discomfort. Some pain about an hour and a half after second feeding. We will see if it helps him sleep through the night. I am also debating whether or not I should send him to school tomorrow. The Dr. said he may need a day or two of rest. I could use some too. :-)

Endoscopy

Endoscopy is a minimally invasive diagnostic medical procedure that is used to assess the interior surfaces of an organ by inserting a tube into the body. The instrument may have a rigid or flexible tube and not only provide an image for visual inspection and photography, but also enable taking biopsies and retrieval of foreign objects. Endoscopy is the vehicle for minimally invasive surgery.

Many endoscopic procedures are considered to be relatively painless and, at worst, associated with mild discomfort; for example, in esophagogastroduodenoscopy, most patients tolerate the procedure with only topical anaesthesia of the oropharynx using lignocaine spray.[1] Complications are not common (only 5% of all operations)[citation needed] but can include perforation of the organ under inspection with the endoscope or biopsy instrument. If that occurs open surgery may be required to repair the injury.

Eosinophilic esophagitis is an inflammatory condition in which the wall of the esophagus becomes filled with large numbers of eosinophils.

Eosinophils are white blood cells (leukocytes) manufactured in the bone marrow and are one of many types of cells that actively promote inflammation. They are particularly active in the type of inflammation caused by allergic reactions. Thus, large number of eosinophils can accumulate in tissues such as the esophagus, the stomach, the small intestine, and sometimes in the blood when individuals are exposed to an allergen. The allergen(s) that causes eosinophilic esophagitis is not known. It is not even known whether the allergen is inhaled or ingested. Eosinophilic esophagitis is more common among individuals with other allergic conditions such as asthma, hay fever, allergic rhinitis, and atopic dermatitis.

It all sounds so clinical, but what it translates to is misery for my little boy. I look at the picture from his bad hair day, and he looks chubby. Right now he is gaunt, his eyes are dark and sunken in, his skin is pasty white, and he is just not my sweet & happy guy. He has been throwing up even more than usual, and it is much harder on him because it is a thick sticky mucus that causes him to choke. He had aspiration pneumonia the week before Spring Break. Tomorrow's test just can't be here fast enough. I know there is a possibility that it will lead to surgery, but at this point I just want my baby to feel better.

I will post results of the test soon. Hopefully, tomorrow.

Getting back to blogging

I never imagined how difficult it would be to keep up with a blog. With all of the irons I have in my fire, I just don't get to post as much as I would like. But, that is the life of a mom with a special needs child.

Hopefully, that will be changing soon. We bought a laptop for our other children to use to do their schoolwork, so maybe I will get my computer time back. I have also met several more moms with special kids, and that has motivated me to get back to work on this blog.

Today, I spent several hours researching what is called "blenderized feeding". The idea is that tube-fed children can be fed real foods and not just commercial formulas. I have posted links to the 2 sites I found to be most helpful in the Resources section to the right.

We tried to do a blenderized feeding today. I had tried it in the past without much success. The MicKey extension that we use to feed Stephen his formula was just too small for a bolus feeding. Also, I was using olive oil to grease the syringe. Today, I used the bolus extension, which is a bigger tube, and liquid soy lecithin to lube up the syringe. Administering was like night and day. It was so much smoother. Unfortunately, I gave him too much, too fast, and too soon after his last formula feeding. He threw every bit of it up. Yuk. I am not giving up though. Patience is the key with this. I may also cut back to just oatmeal and rice milk for the bolus.

I have also started a spread sheet to measure his nutrition intake. The first page lists each item we give him including supplements and water each day. The second is a caloric chart for the foods we intend to feed him. Since we are pureeing (like babyfood) his grains, veggies, fruit, etc., we calculated them by 1 oz. cubes. More on that in another post. The third page is a list of daily food intake requirements for his age. Some of the information came from the government's new food pyramid, and some came from the Kids with Tubes site in their letter regarding Nutrition for the Tube-Fed Child.

It is hard enough to make sure our typical kids are getting proper nutrition. And it can be agonizing trying to do the same for our special kids when we don't want to rely on commercial formulas. Help is out there, and we can do this. The most important thing we need to give these little blessings is love.