"I'll Try" by Jonatha Brooke

I am not a child now
I can take care of myself
Mustn't let them down now
Mustn't let them see me cry
I'm fine, I'm fine

I'm too tired to listen
I'm too old to believe
All these childhood stories
There is no such thing as
Faith and trust and pixie dust

I'll try, but it's so hard to believe
I'll try, but I can't see what you see
I'll try, I'll try, I'll try

My whole world is changing
I don't know where to turn
I can't leave you waiting
I can't stay and watch this city burn
Watch it burn

Cause I try, but it's so hard to believe
I try, but I can't see what you see
I'll try, I'll try, I'll try

I'll try and try to understand the distance in between
The love I feel, the things I fear, I dearly say good dream

I can finally see it.
Now I have to believe:
All those precious stories.
All the world is made of
Faith, and trust and pixie dust

So I'll try,
Cause I finally believe!
I'll try,
'Cause I see where you see!
I'll try.I'll try,to fly.

A Difficult Time For Zachary

It has been a rough couple of days. It seems like when Joshua is doing well, then Zachary has difficulty. Since Zachary had his upper endoscopy with a biopsy on Friday, he has been feeling worse every day. It hurts his chest to get up and move around and he has difficulty eating. I finally went to the doctor today to make sure he was okay. It turns out that since he already had esophagitis when he had his biopsy, the site became more irritated. We are now watching for bloody stools and today we begin Sucralfate to coat his digestive system. Hopefully this will help him. He is has tried several times to go outside and play, but ends up coming inside shortly after, due to pain.

When things are tough around here, I always try to find ways to escape without leaving home. This video on YouTube just filled the bill... Hope you enjoy!

Zachary's Latest Endoscopy and Biopsy

Zachary had his fourth endoscopy and biopsy today for the medication study he is participating in for Eosinophilic Esophagitis. Although the biopsy information will all go to 1st Allergy, Dr. Rosensweig, our pediatric GI specialist was able to send us home with a picture of Zachary's esophagus. I was not surprised by the fact that Zachary's esophagus was moderately to severely furrowed with esophagitis present, as he has had quite a bit of discomfort this month. However, I am worried. We can go up one more level on his experimental medication, but then we may have to begin an elimination diet. As it is, he is going off of Prilosec and beginning a new medication to coat his esophagus before he eats. I hope this helps him.

I found a really interesting article on EE while trying to figure out exactly what "furrows" do to your esophagus, Although the article did not answer that particular question, it had very helpful information on the differences between GERD and EE in children. Here is the link: http://www.childrensmemorial.org/cme/online/article.asp?articleID=125

Now that there is a very realistic chance that Zachary will have to alter his diet, I will pay particularly close attention to the blog Funky Food...Feeding Kids Allergic To Food. You can find this blog at http://funkyfoodallergies.blogspot.com. You can also find Trisha on tTownmoms.com.

Hope for Children?

I saw this video and it just broke my heart!

Have a Beautiful Tuesday

I thought this was pretty cool. Musician's from all over the world got together and played a song for peace.

A Week of Doctor Visits

Yesterday Zachary and I headed down to Denver for his monthly infusion of experimental medication. We dropped Josh (who was feeling dizzy) off at school and hit the highway. It was one of those days I dreaded at the infusion center. They were short nurses and we had to wait an hour before someone came to the clinic to give Zach his physical before the infusion could be started. Each visit has its own special protocol and yesterday, Zachary not only required a physical, but a pre and post blood test. To make everything a little more frustrating, there were not enough rooms available so we were in a room with three other women receiving infusions for various medical conditions. While Nikki, the nurse in charge of Zach's case, was trying to explain the next requirements for the study, the women (understandably) were chatting, making it difficult to concentrate on what Nikki was saying. By the time Zach had his second blood test and we left, we were both emotionally exhausted.

When I returned home I was really looking forward to just laying on the couch and taking a rest, but that was not to be. When I picked Joshua up from school, he was frustrated and frantic about a literacy project he was working on. I decided to call the teacher to find out what he was suppose to do for the project and when each section was due. As I talked to her, I found out that for the past week, all of Joshua's teachers have been concerned about his general confusion in their classrooms and although he was turning in homework, it was often the wrong assignment. I put on my to-do list, call the neurologist.

Giving up all hope of getting any rest, I went and worked out at the gym while waiting to pick up David from track practice, and then rushed home to go to the Columbine Concert that the TVHS band was performing that evening. It was an absolutely awesome concert and definitely the highlight of my week. However, before even going to the concert, I had to get Jeff out the door to the airport as he is spending the week working at Lawrence Livermore National Labs in Livermore, CA.

After falling in bed after all the kids were settled for the night, I was awakened every couple of hours by Rascal, our Black Lab. She has an ear infection and was in a lot of pain. Finally I remembered that I had some left over Remidryl (doggy ibuprofen)gave it to her, and was able to sleep from 2:30 AM until 6:00 AM. I woke Joshua and David up at 6:00 to get them out of the house at 7:00, but Joshua had trouble waking. When he did finally get up, I had to help him down the stairs because he felt so dizzy. By 8:00 AM I had called the vet, Josh's pediatrician and the neurologist. Rascal has a vet visit tomorrow at 9:00, Joshua has a neurological work-up at 4:20 tomorrow as well and Zachary has to go back to Denver on Thursday for a three-day blood test for the study.

This week is why it has been and will be difficult to ever have a career while my children are still young. There are stretches of weeks where everything goes smoothly and then these situations inevitably happen. What I find interesting is how quickly I usually forget weeks like this and then ask myself "why can't I ever get anything done?"

As my mother-in-law always reminds me, "this too will pass." So, I will turn to my favorite Bible verse to lift me up, James 1:2-4 and listen to one of my favorite songs "You Never Let Go" By Matt Redmond and go on, hopefully with a good attitude.

James 1:2-4:" Consider it all joy, my bretheren when you encounter various trials knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing."

What Joshua Taught Us

I watch my 11 year old son swim with his age group in swimming and my heart swells until it feels like it will burst.  The parents around me are reading, chatting or watching their own children practice.  However, to me, watching Joshua swim and blend in with everyone else on the team is akin to being the mother of an Olympian swimmer watching her child compete with the best.  You see, Joshua was born with a congenital abnormality in his brain.   

As a school social worker in Illinois, I worked with children with disabilities.  I never dreamed that any of my children would be affected.  I had my Master's Degree in Social Work and my husband had his PhD in Electrical Engineering.  I envisioned perfectly healthy children in the not too distant future.  I was 27 and I couldn't wait to begin raising a family.

In 1992,  I gave birth to my first, a wonderful little girl who was the spitting image of her Daddy.  In 1994, my second child was born; a son.  Blond haired, blue-eyed, he was the image of my side of the family.  Then, in 1996, my third child was born.  He had the physical features of his sister combined with the fair coloring of his brother.  It was a happy, yet busy time.  I was living my dream and cultivating my young children's minds by providing them with a variety of stimulating educational opportunities, play groups and even sports activities.

Joshua reached his initial developmental milestones, such as rolling over, sitting independently and babbling as quickly as my other two children.  When he turned six months things began to change like a light snow builds into a blizzard.  It started with an infection in Joshua's little toe on his right foot.  We were told he had a little infection due to an ingrown toenail that would get better on antibiotics.  He didn't get better.  He started running fevers, he stopped developing language and even after fifteen months he was unable to walk.  

After a year of agonizing over what was wrong with Joshua, through a series of medical tests we found that he had an arachnoid cyst in next to the right temporal lobe in his brain, as well as a problem with his immune system.  Apparently, when he was in-utero, his arachnoid membranes (the lining of the brain that creates cerebral spinal fluid or CSF) split into two near his right temporal lobe and then filled up like a balloon with CSF fluid, creating pressure in his brain.  At one point we were told he didn't have a right temporal lobe as the cyst compressed it!

Although family life had already become filled with tension, things became worse.  Life for everybody in our family became an endless parade of doctor's appointments, hospitalizations and emergency room visits as Joshua developed seizures and sometimes after a seizure,temporary paralysis.  My two older children had to grow up quickly.  They were frequently dropped off with friends, family or just picked up from school to accompany us on our medical emergencies.  Outside activities came to a standstill.  Luckily our family pediatrician was a strong Christian and really helped us through the medical mazes and was an amazing support. However, our search for answers continued for four years and in the midst of this craziness, we had our fourth child, another son.

When my fourth child was born, I was pretty sure I would have a nervous breakdown.  The pregnancy had been unplanned and I was scared.  However, Zachary was an easygoing, flexible baby.  He hung out at doctor's visits, occupational therapy, physical therapy and teacher visits.  He and Joshua seemed to develop at the same rate.  By the time Zachary was able to walk and talk, Joshua was reaching the same milestones and they developed a strong friendship.  To this day they call each other "best buddy."  

As Joshua grew older, the doctors were better able to diagnose him.  We moved from California to Loveland, Colorado and The Children's Hospital in Denver had a neurosurgeon who was able to figure out the elusive problem that had interfered with all of Joshua's treatments.  Dr. Handler identified that Joshua had hydrocephalus as well as an arachnoid cyst. He replaced the single shunt in Joshua's arachnoid cyst with a shunt with two ports (cysto-ventriculo-peritoneal shunt.)  Finally, at four years of age, Joshua began to take off and develop both intellectually and physically.

Now, seven years later, I watch my son blend in with everyone else.  What used to seem like a tragedy has turned into a blessing.  My husband and I feel like, without us knowing, God had prepared us for Joshua.  My years as a social worker enabled me to to advocate for my son, not only medically, but educationally as well.  With the training and work experience I had received I was able to make my way through the mazes of doctors, therapists and teachers and keep sight of our ultimate end goal, to help Joshua live a quality life.  Ironically, though arachnoid cysts are recognized as rare disorders, we have met families of at least three other children with arachnoid cysts and have been able to offer them our knowledge, experience and support.

The life I imagined at 27 is certainly not the life I have lived these past 17 years.  However, our experiences have provided our family with a great appreciation for the little things in life.  My husband and I actually smile when Joshua is arguing with his siblings, because he can.  And in the end, we have something better than a perfect family, we have a family that, although we have our share of arguments, loves and appreciates each other.  We know that in spite of bad things that happen to us in life we can get through anything together...as dealing with a disability has taught us.

Keeping a Medical Workbook

Having four children, two with significant medical issues, can be very overwhelming when trying to remember vaccines, surgeries, hospitalizations etc...I find it very helpful to keep a medical workbook for each child and bring it with me to all doctor visits.

I first began using medical workbooks when Joshua began having so many tests, hospitalizations and specialist visits, it was hard to keep track of all the information. I began a three inch binder and labeled the separators as Doctor Reports, Lab Tests, EEG, CT, MRI Reports, Surgeries and Hospitalizations, and Routine Care. After every significant visit, I would ask the office to send me the final report.

Now that I have a child with Eosinophilic Esophagitis (EE), I keep a workbook with labels that include foods tried, and foods to avoid. I also have a section labeled "studies" as he is participating in a study through 1st International Clinical Research Centers.

I keep a workbook for my other two children as well, even though they do not have any significant medical problems. It helps to know when that collar bone was broken, who took care of it and the hospital we went to get treated. With everything all in one place, it is a lot easier to address medical emergencies as they come up.

The final value of these workbooks is that you are aware of all that is being written an permanently filed about your child. You can be vigilant about making sure that there is a correct record of allergies and treatments.

What To Do If The Ice Machine Is Broken

The automatic water on our refrigerator no longer works. It has not worked for awhile, but we seemed to muddle along for awhile expecting it to magically fix itself. However, we finally had to address the situation when we had company and no ice.

Finally, after weeks of whining about the ice maker, I got the brilliant idea to go buy some ice cube trays. My husband shut off the water as it was leaking and creating havoc not only with the ice, but the entire freezer. Once again we muddled along with three ice cube trays. Of course, our kids have grown up with everything automatic so once the ice cube trays were empty, they became confused and befuddled. I gently reminded them that they had to fill them up with water and put them in the freezer. We are still working on that.

I finally had the brilliant idea to fill up the ice machine with ice cubes from the trays each morning and evening. Voila! We finally had a solution that everybody could live with. The system actually works very well with relatively little effort.

This whole quandary probably seems very silly to the generations raised up through the seventies. However, in the past twenty years we have been making things so easy for ourselves and our children, we lose some common sense. The sad thing is that most people think that they cannot live without these modern conveniences and forget that there was a time when we did everything ourselves.

I see that all four of my children are missing the small tasks in life that used to be done by the children in the house. Since most things are done for them, they are constantly bored, as no one can play all the time. In a way, I welcome the ice machine breaking and I am not in any hurry to fix it. It is one small step for self-reliance. Now that my eyes have been opened by such a small thing I can maybe begin to address this whole boredom issue...laundry, mowing, weeding. The kids are in for a wonderful summer!

A great article from the Michigan Daily about Gerald Ford

http://www.michigandaily.com/content/ford-left-lasting-impressions-colleagues-michigan

Palm Sunday Eve

This has been a very draining week, which is why I haven't posted in so long. Unfortunately, I developed strep throat. Being 45 years old, I thought that I just had a virus and waited five days before my 17 year old daughter coaxed me into going to the doctor by going with me. By the time I saw the doctor, my tonsils were so swollen that he prescribed liquid medicine (how embarrassing when I picked it up at the pharmacy.) Michelle, however, loved the role reversal and got a certain glee at seeing the shock on my face. Instead of pity, my whole family got to say "I told you so!" as they had been trying to get me to go in for days.

The whole experience was kind of like these rocks in the picture. They had cracks in them that filled with fluid, that then froze causing the rocks to break apart from the cliff and fall on the road. I had Jeff take this picture with his phone on the first day of my sore throat when we went for a walk. Little did I know then that they were a symbol of eventually happened to me at the end of the week!!

All week I kept thinking about those rocks and how they can also represent what happens when we don't fill in our lives with the Holy Spirit. We can think we are rock solid, that nothing can break us. However, when the little things keep being stored in the cracks, eventually everything can break and fall apart. However, keeping our eyes on God helps to fill those cracks and keep us strong.

Jeff and my experience in raising our four children has taught us that leaning on God to keep us whole has been an absolute necessity for both our marriage and our family. When one thing goes wrong with the children's health, or ours, it has the potential to pull our whole family apart. We couldn't begin to hold it together on our own.

On the eve of this Palm Sunday, I thought this was a good reflection. Throughout this Holy Week, so many events took place that could have pulled the disciples apart, but Jesus was the cement that kept them (and still us) together. Despite the challenges that we have in our lives that is the constant hope and promise that we can keep with us.

Have a blessed Palm Sunday!

Sometimes I Get Very Tired

I usually try to stay on the positive side. As a matter of fact, when I was in the Master's program for Social Work, that was actually one of the criticism's that a professor gave me. She would approve of me today. I am just tired. What does a mother of four do when she is not feeling well, but can't take the time out to rest?

This week is a significant week for all of my children. David has a track meet tomorrow, Zachary begins a new season of Tae Kwon Do, and Joshua has so much make up homework due because he missed school all of last week. Wading through the mounds of sixth grade math, geology and English (poetry) just seems to take forever. I have to be very careful not to display any hesitancy with Joshua as he is very sensitive and will think that he is bugging me. Luckily, Zachary keeps himself busy writing in his blog, reading or emailing his friends on the computer.

As my sister-in-law Cindy says, "tomorrow is a brand new day, with no mistakes in it." Usually days like this I go to bed early and start fresh the next day. Although I don't have these days very often, I think that it is important to acknowledge them. Everybody has challenging days and when I actually put my day into perspective, I have a lot to be thankful for. So I will soldier on and look forward to tomorrow!

To Swim or Not to Swim

Joshua is 12 years old now and has been swimming on the Loveland Swim Club since he was three years old. He has been regularly attending practice since fourth grade. However, middle school has been a huge change for him. In elementary school, he was in one classroom and pulled out for an hour a day for extra help in math, reading and writing. However, now he has to organize his books, keep his locker organized, attend six classes (with two classes switching off each day,) and make sure he has his homework. This is hard for any sixth grader, but it is especially challenging for Joshua, who still has some difficulty remembering more than three steps.

We have never had an issue with Joshua going to swim practice three times a week, for an hour. He enjoys swimming and is really adept. However, this year he has been balking. At the beginning of the year, he had some difficulty with his ventriculo-cysto-peritoneal shunt. It was leaking around the temporal site. When we went to see the neurosurgeon, we had good news and bad news. The good news was, the problem resolved itself without any surgical intervention. The bad news was that sometime between his last shunt surgery when he was four, and now, he had developed a Type 1 Chiari Malformation. Obviously, around that time, swimming was the first thing to cut down and he only went two days a week. However, we have been trying since that time to build up to three days a week again. It seems like some weeks we only go once because Joshua is so overwhelmed and tired when he gets home from school.

Most parents would advise me to pull Joshua out of swimming. But, I believe that the reason Joshua has done so well over the years is that I continually push him past his comfort zone. Most people who meet Joshua, have no idea that there is any medical issues or delays. He has gone from significant special education intervention in the public school to being completely integrated with the regular curriculum, performing at age level or above in all subjects but writing.

I was so proud of Joshua in January when he tried to go out for wrestling (with the neurologist and neurosurgeons permission, of course.) The practices were too intense for him, however, and he ended up with an increase in seizures. It was his decision to drop out after about a month. This brings me back to the question of swimming. He has had a hard time getting back into the mode of swimming. He took a break while wrestling, but I put him back in after he dropped out. I did this for two reasons. The first reason is that it is wonderful exercise for him. Second, it really helps him with cross coordination.

My dilemma is whether I should pull him out of swimming for the rest of the school year and let him just focus on school, or whether I should have him go two times a week. I can see the argument for both. It has been a difficult year for him, but also rewarding. His teachers can't say enough about how hard he works and how impressed they are that he never asks to get out of work, comes in over his lunch hour to finish projects and also attends after school tutoring sessions. Given this extra effort, he probably needs to just rest after school. However, I really believe that physical exercise in and of itself is a wonderful reliever of stress and it is a good habit to develop when you are young.

I will continue to puzzle over this quandary and write of my final decision in April. What to do, what to do...

For information on arachnoid cysts: http://www.ninds.nih.gov/disorders/arachnoid_cysts/arachnoid_cysts.htm

For information on Chiari Malformations: http://www.ninds.nih.gov/disorders/chiari/chiari.htm

For information on Seizure Disorders: http://www.epilepsyfoundation.org/about/types/

Being a Crack-Filler

My mother-in-law, mother of seven, has an interesting description of herself. She calls herself a crack-filler. What she means by this is that when she was raising her children, she found it difficult to volunteer to lead any church committees or school committees because of all of the time commitments she she had raising her children. However, she really wanted to help out and volunteer. Her strategy was to contact the head of an event to find out what different activities had not already been covered and she would fill in the cracks. If someone needed cookies, she baked them, if an event needed help setting up or cleaning up, she was the one to call. She wanted to find a way to be helpful and involved in all areas of her family's lives and this is how she was able to successfully do that.

Although my mother-in-law did not have any children with special needs, her strategy has been very helpful to me. When my third child, Joshua was going through the diagnosis and initial treatment for seizures, and an arachnoid cyst, I was not able to focus on anyone but him. It was a very traumatic time for our whole family. My oldest two really suffered for this as they were just beginning in their school career.They would have really liked to have their mommy help out in the classroom, or even volunteer for parties. Unfortunately, with emergency trips to the hospital being a regular occurrence, I was not able to be a reliable source of help on a scheduled basis.

As Joshua grew older and we started to learn how to live around the doctors visits and hospitalizations, I began to try to be a "crack-filler." At first, I asked the elementary school teachers if I could grade papers at home. It didn't make a lot of sense to me to hire a babysitter for my two little ones, Joshua and Zachary, but I wanted my two older kids to know I was interested in their lives. When my second child, David, joined Cub Scouts, I was able to volunteer to be the assistant leader to his den. I made cookies and other food for Teacher Appreciations and I always tried to be the one to call people when that became necessary. By the time Joshua was eight years old, I actually began coaching gymnastics two days a week to participate with my daughter and also became more involved with Cub Scouts with my second, David.

It is so easy to get caught up and worn out by a child's health issues or developmental delays. It is extremely important to compartmentalize your various activities, even when you feel overwhelmed and especially if you have other children. Our family's experiences have taught us that a child can have an illness or disability, but it is only a part of who s/he is, not their whole existence. When another of your children or your spouse needs to have time and energy, sometimes the child with the disability or health problem has to take the back seat. The same holds true with just taking time to enjoy yourself. Being a "crack-filler" is a very valuable contribution you can make to help out organizations, your family and even yourself.

Eosinophilic Esophagitis

Aside from being hard to pronounce, Eosinophilic Esophagits is an elusive disorder that can mimic indigestion and reflux. Although some children have this disorder so severely that the only thing they can consume is a special formula, others have to listen to their siblings say that they are faking their stomach ache. This is where my ten year old Zachary lives. He always had difficulty eating, even as an infant and was actually diagnosed with reflux when he was weeks old. However, with Reglan and time, he outgrew his reflux and developed into an extremely picky eater. He had approximately ten foods that he survived on, along with liquid vitamins.

Our first indication that there might be a bigger problem for Zachary was when he had an anaphylactic reaction to a white chocolate macadamia nut cookie from Sam's Club on the way to kindergarten. His eyes swelled shut, his throat started closing and at the same time he was vomiting. Luckily, we were right by our pediatrician's office and I rushed him in, where they took him back and gave him epinephrine immediately. Within a short time period, he was reacting to all tree nuts and we now know he is allergic to at least one of the preservatives they use in baked goods.

A year later, Zachary's first grade teacher called from school to say that he was in the nurse's office because he had choked on a cracker. Choked on a cracker? I could see a toddler doing that, but not a six year old child. I was baffled, but tucked it away in the back of my mind until Zachary began having chronic stomach aches that would just have him curled up in his bed crying.

After several visits to Zachary's pediatrician over the stomach aches, our regular pediatrician, Dr. Bruce (who was just as baffled as I was) referred Zachary to a Gastroenterologist because he was clearly unhappy and losing weight. Zachary began seeing a Denver pediatric GI specialist, Dr. Rosensweig in October, 2005. Within two months, he was scheduled for an endoscopy and biopsy to try and determine what these mysterious stomach pains were all about.

The entire time that Zachary was being seen for his stomach, as a mother, I was being pummeled with concern and advice. Very well meaning friends inquired whether Zachary didn't like school, had separation anxiety or just needed to be treated for reflux. I doubted myself as to whether I was taking these stomach aches too seriously. However, about a week before Christmas in 2005, the biopsy results came back and Zachary was diagnosed with Eosinophilic Esophagitis (EE).

Some links that I found useful after being presented with this diagnosis are as follows:
http://www.medicinenet.com/eosinophilic_esophagitis/page2.htm
http://www.apfed.org/ee.htm
http://www.apfed.org/ee.htm

Support groups have been very helpful in helping us deal with this disorder. Here are some links to support groups:
http://njpaeos.org/ee.html

Why I Picked My Title

Anyone who has seen the movie "Remains of the Day" probably remembers the line that Emma Thompson says near the end of the movie (which I cannot quote word for word) that some people think that evening is the best time of day. There is all sorts of symbolism that goes into that statement. I believe she is saying that once you have lived out your tumultuous life, the evening, or the remains, is the most pleasant and relaxing part of life to live. I picked the title of my blog "Late Afternoon Soon to be Evening" because I am not quite to the remains of my life, but I am definitely beyond noon and certainly into late afternoon.

To expand on this introduction, I have four children spanning in age from ten to seventeen. I have been married for almost 20 years. We have a rather unique family and have had a very unique journey. You see, my third child was born with an arachnoid cyst in his right temporal lobe, along with hydrocephalus. However it took us four years to receive a complete diagnosis. My youngest son also was afflicted by unfair genetics and has Eosinophilic Esophagitis. These conditions have exposed our family to more of the medical profession than I ever thought I could handle.

As fate would have it, I earned my Masters in School Social Work and worked in that profession for seven years before having children. My job was to evaluate children as part of a team to determine if they qualified for special education services. Never in my wildest dreams did I think that I would ever be the recipient of such services. However, my little boy began his illustrious education in the 0-3 program, moved to the Early Childhood Program and then into Special Education. Now as a sixth grader, he is phasing out of special education and being integrated back into regular education, quite successfully. Hopefully, our experiences will help someone else along the way.

My youngest son was diagnosed with Eosinophilic Esophagitis (EE) when he was in the first grade. After three older children going through elementary school, I was pretty sure that all of his stomach aches and eating problems were related to anxiety. However, after he had an anaphylactic reaction to tree nuts, the complaints increased. To make a long story short, he had a biopsy and was diagnosed as having EE in 2005. He is presently in a medical study in which he has to have an infusion of medication once a month and biopsies every 8 months.

You may be curious about my oldest two children. They obviously experienced the fallout from all the doctors visits and hospitalizations from my two youngest children. However, they both have found coping strategies and are very creative. My daughter is a gymnast and a very good photographer. My son loves music and plays at least four different instruments. They are both very sensitive to kids with any kind of developmental disability or illness. In a nutshell, I am very proud of both of them.

As I stated earlier, hopefully someone will benefit from some of the experiences I have had to stumble through.