Mother's Day at Children's Hospital

I'm tired so my post will be shorter than usual and probably not as eloquent.  On Saturday night my daughter Danielle called me to let me know that she had been bitten by a friend's dog.  That alone scared me but then she told me she had been bitten in the face.  My mind immediately brought up the picture of Danielle in her beautiful dress for Homecoming and my heart skipped a beat.

As I drove to pick her up I had such a hard time concentrating on anything.  It is kind of sad how easy I adjust to taking Sam to the hospital but my mind just can not wrap around taking Ben or Danielle.

Danielle didn't sound worried as I spoke to her on the phone and I gathered strength from that.  She assured me the dog was up to date on all his shots.  But when she got into my car and I saw the depth of the gash under her left eye and the purple color on the tip of her nose which also seemed to have lacerations my mind began to panic.  We rushed to the closest ER and we began to fill out the all too familiar paperwork but when I was asked her birth date, I almost gave Sam's, that is the default that my mind naturally goes to.  I had to think about Danielle's and again my heart hurt.  This is my only little girl, my beautiful, sweet, caring daughter.  I don't want this to be happening and yet here we were waiting for the doctor to numb the nerves in her face so that they could clean and determine the extent of damage.

Watching my daughter go through this slowly peeled away whatever calm facade I was presenting.  My tears flowed right along with hers.  The doctor quickly decided Danielle needed to go to Children's so she could be seen by someone from the eye institute.  We were discharged and back in the car headed to Children's.  I kept reassuring her things would be alright, we were headed to the best place for them to help her, but I knew the questions swirling around in my head were amplified in hers.  Is her eye okay?  Can they fix the severed tear duct? Why is her nose discolored?  How bad will her scarring be?  Will she need surgery?  What about infection? How much pain is she in or will be in?

Deep breath...concentrate on getting there and take it one moment at a time...just as Sam has taught me.  The ER was expecting us and got her directly into a room but then we had to wait for the doctor from the eye institute until 3:00 a.m.  Danielle was given pain medication and had finally drifted off to sleep when the doctor arrived to do his examination.  This doctor had to inject a dye into the tear duct and see if it came through or was unable to.  In order to do this he began by inserting many different drops in Danielle's eyes, all of which seemed to burn.  He numbed and dilated Danielle's eyes and then began to use a probe, that in the eyes of a 15 year old looked like a huge needle being stuck into her eyelid.  He poked and prodded, examined her eyes all around with a bright light and then performed the test.  Danielle whimpered and I grabbed her hand so amazed at how strong and brave she was being.  When the test was finished he told Danielle that she would need eye surgery and that he would call his team and schedule it for this morning. I have long learned how to stay up all night on sheer adrenaline alone but I have never learned how to not hurt to the very depths of my soul when one of my children is hurt. I watched Danielle begin to sob and I sobbed right along with her.  We left Children's ER and got home at 5:00 a.m.  We slept for 3 hours and then had to be back at Children's by 9:30 a.m. for surgery at 11:00 a.m.

Before we left for the hospital Danielle gave me the Mother's Day card she made.

It's little things like this that keep me going, that help me to be positive, that promise me that I am blessed no matter what.  On our way to the hospital we began to joke how Danielle can tell her friends that she has already had plastic surgery at the age of 15 years old.  I told her she was opening me up to new parts of Children's Hospital that Sam and I have not experienced like the eye clinic and plastic surgery.  I told her that she can tell people she had a nose job, her eyes done and a little botox (to cover the swelling).  She wished me a "Happy Mother's Day" again and I told her, yep look at all the quality time she and I are getting to spend together (like the last 24 hours).  I did let her know that in the future we could find something more fun to do.

We checked into the hospital and she was admitted to the 9th floor.  The surgeon came in and explained to me that she would be inserting a stint into Danielle's tear duct that would go from the top tear duct to the lower tear duct and into her nasal cavity.  This clear tube would remain in place to keep the tear duct open as everything around it healed for the next 3 months.  She would then stitch the laceration below the eye and check her over.  Danielle and I continued to joke back and forth until we got to the pre-surgery unit, as I hugged and kissed her goodbye the tears began to flow and I assured her I would be there when she woke up.  I began to sob as they closed the surgical doors and her surgeon assured me she would take good care of her.  I tried to explain through my tears that although I have gone through this many times with my younger son I still don't handle this part well.  Danielle's surgery took 1 1/2 hours.

The doctor met me in the waiting room and asked me to follow her to a conference room but before she closed the door I needed to ask, "Did everything go okay?".  She smiled and nodded and said "I want to go over everything with you."  She explained the tear duct surgery to me again and said that everything went well.  She told me that she had closed the laceration below Danielle's eye except for one small area that was missing a section of her skin.  She didn't want to pull this close because it would pull the eyelid down.  She felt it would still heal well and the scar would not be very noticeable. She explained to me that they reopened the lacerations on her nose because they didn't realize how deep they were.  They cleaned them and stitched them close.  She said she had some concern about the discoloration of the tip of Danielle's nose and asked the ENT plastic surgery unit to do a consult.  They felt that the discoloration was a bruise but wanted her to be seen for a comparison when she returned for her one week check up.  She said her eye was unharmed and that we could expect a very good result from the work that was done.  She explained the need to watch for infection although Danielle will be on antibiotics for 10 days and to report any increase in swelling, discoloration or fever.  She will need to be seen in one week by the eye institute and the ENT plastic surgery unit.  I thanked the doctor and she left.

The anesthesiologist came out next to let me know that she handled the anesthesia well and that they had removed her intubation tube.  She was groggy but slowly coming around and everything went well.  We chatted some more about Danielle and Sam and I thanked him for his help too.  One of the things I have always liked at Children's is how each of the doctors involved take time with you to explain and answer your questions.  As I entered the recovery room Danielle was just beginning to open her eyes and lift her head.  The ENT plastic surgeon gave me her review and concerns regarding Danielle's nose and the discoloration.  When I was finally left alone with Danielle and her nurse I looked over her nose and her eye and cheek.  It looked much better than the day before and I was amazed at how smooth her skin and stitches looked.  I reassured her that she was as beautiful as ever and that everything went well. She moaned softly as she came out of her grogginess.  When asked her pain level, she said a 5-6.  She was given some morphine and I began to explain to her that she had an eye patch on which is why she couldn't open her left eye.  She was thirsty and we started with a popsicle that took her a while to eat as her tongue and mouth began to function again.  We moved up to sips of water and then she was transferred to the ninth floor.  She would need to eat, drink and walk before she could leave the hospital.  After picking up her medication, gauze, eye pads and some hard candy we returned home at 5:30 p.m.  She is tired, sore, a little swollen but she is doing great.  I promised her I would not post pictures of her pre or post surgery (I mean she is 15 and this was way beyond a bad hair day).  She even wants to return to school tomorrow.  She will not be able to take gym class or participate in sports for a couple of weeks.

As I get ready to go to sleep I am thankful for great surgeons, great ER's and I am hugging each of my children a little tighter again tonight.  My husband surprised me with beautiful outdoor flower arrangements and Ben surprised me with a really big card (and I mean a really big card, I put Danielle's next to it for a size comparison) and he made the envelope.

My Mother's Day was not what I had planned but I am thankful, blessed and happy this evening...but most of all tired.  Good night everyone, to all my Mom friends I hope you had a blessed Mother's Day!

Praying, Thinking and Reflecting!!

I've spent these last couple of weeks in deep thought. As I reflect on 2011...it really wasn't one of my favorite years.

Sam started it in a body brace as we dealt with the diagnosis of Perthes...and yet I found hope.

When Sam became more stable my health took a downward spiral...and yet I found strength.

I went on an amazing road trip...and I knew I was blessed.

Ben almost lost his life in a truck accident...and I am thankful that he is still with me.

Sam's Perthes continued to progress...and yet I gained knowledge and found more hope.

My father-in-law was diagnosed with colon cancer...and I continue to pray.

I am often asked how I stay positive and I can assure you that it is through faith alone. I'm not that strong, my emotions are worn on my sleeve for good or bad. I cry at sad movies, heck I can cry at a simple act of kindness. Sam's journey has stripped away my buffers, my shell, my mirage of the strong, independent, capable person I like people to think I am. I hurt deeper, I feel things stronger, and it is only by the grace of God that I pull myself up by the boot straps, smile and carry on. But these challenges...these insights into who I am...are the same things that are changing me, building me, bettering me...shaping me into the person God wants me to become. When I was younger I thought I had things pretty well figured out. I worked hard, I liked obtaining the goals I set, I had plans, I had dreams...and I was going to obtain them.

Hmmm, maybe that was part of the problem...a lot of that thinking was all about me. If I was going to have a successful career, marriage, friendships, life in general...I needed to think about others. I always knew I was a bit stubborn, hard-headed and didn't always take direction very well but I always thought that was a strength. I mean...tell me I can't do something and I'll prove to you I can. I have always been more of an introvert but I want people to view me as an extrovert. I like to be in control and I always thought I did a good job doing it.

But now I'm older, wiser and my journey on this earth has taught me so very much. God knew about my stubbornness and he sent me three children, but two (not just one, that wouldn't have been enough) that required extra parenting and attention. I quickly learned when I became a Mom that I had lost my concept of control. When I found out Ben was dyslexic and had other learning issues I wanted to make that go away. I didn't want him to struggle...and yet it has been through the struggle and challenges that Ben has become the young man I see today. He's creative and he doesn't let much hold him back. He is persistent, smart, impulsive, strong and has one of the most impressive vocabularies and along with his wit, humor and quick come backs he is a joy to be around.

Danielle brought into my world a gentleness and a compassion that forever changed me. She is smart and has a wonderful sense of humor. She has my edge, my determination, my drive but she also has a heap of care and compassion. She shows some of my control issues, my sarcastic sense of humor and my goofiness, but she is stronger and wiser than I was. She can hold her own with both of her brothers and she doesn't feel neglected or left out considering the extra attention they both receive. She has an amazing personality and I enjoy her company.

And how do I even begin with Sam. Sam has taught me so much. If I thought I had any semblance of control Sam quickly let me know that I was mistaken. I will never forget the moment we were transferred to the ICU because Sam didn't seem to think breathing was that big of a deal. I will never forget how helpless I felt as I watched the monitor show me a heart rate that was too high and respiration's that were too low and an oxygen level that couldn't be maintained. I remember dropping to my knees and praying with everything I had for God to help Sam...to save Sam. I realized at that moment that I had no control, and all I could do was pray. I wanted to barter, make promises to God...show in some way, some how that I could still control the situation but Sam's stats quickly erased those thoughts from my mind and I simply prayed.

I wanted Sam to achieve his milestones in the same time frame of a typical child or even better. I wanted Sam to be that child with Down syndrome that defied the odds, that excelled above the rest, that others could look at and feel encouraged. But Sam and God had different plans. Sam didn't crawl until he was almost 2 years old and he didn't walk until he was over 3 years old. Every year I waited and waited for Sam's speech to take off. I was sure that by the time he was 4-5 years old he would be communicating easily and we would be having enjoyable conversations. At 4 years old Sam was still considered non-verbal. He had sounds and some words but he certainly wasn't talking up a storm like the other children with Down syndrome at our NACD evaluations. I had to really listen for Sam's words or to understand what he was saying and that's when I had my "aha" moment. I was a great talker but a not so great listener. Sam required me to become a better listener. He relied on me to talk with him and not at him, to talk at his level and to repeat and add to our conversations. In order for Sam to expand his speech we had to have balanced interactions, something we still strive to work on.

I learned strength and resilience through Sam. Sam's numerous medical issues have required me to be strong and resilient. I had to be able to think on my feet, to not become overwhelmed but instead find my inner strength. I would look at Sam and see his smile through the oxygen mask or watch his eyes light up when his family entered a room, or see him work on his breathing, strength training or therapies just to see our excited expression when he accomplished his goal and I would be stronger. How can I even think of giving up when I'm just the observer and I see this child, my child, fighting, working, challenging himself beyond my expectations.

The hardest lesson to learn has been to slow down and give Sam the time he needs and requires. Sam works with me everyday to instill an appreciation for time. Time given, time spent together, time waiting, focused time, time commitment, quiet time...and the list goes on. I could rush through life, stay on schedule and accomplish so much on my own...because that's what I always did. But then I'm not giving Sam...time. It would be easier to dress Sam instead of wait for him to get dressed on his own. It would be easier to make Sam breakfast then to have him learn how to make it himself. It would be quicker for me to complete the chores then to work through them with Sam. It would be easier for me to fill in the words Sam can't seem to pull out quickly than to wait for him to work them out on his own. It would be easier, it would be quicker...it wouldn't be fair to Sam. It wouldn't be what Sam is so desperately trying to teach me.

I never wanted to be a teacher, it wasn't my passion or calling but I did want to be a good parent. Ben was the first to require me to work more with him. Without training or education and with only the strong desire to help my child I had to figure out how Ben learned. I had to learn how to work with him, help him, challenge him and encourage him. Ben was just getting me ready for my journey into educating Sam. Through my journey with Ben and Sam I have gained a true appreciation for great teachers. I struggle with working with Ben and homeschooling Sam. I couldn't even imagine a class of 20-30 students. I have spent some time in the school system as a parent liaison for special needs families. I have met many great teachers but I still struggle with becoming completely comfortable with how our schools are set up and operate. I feel many schools are doing the best they possibly can to live up to the mandates of our government, but therein lies my problem. I don't feel the government should decide how our children are educated or how and what teachers are to teach. I enjoy working with Sam because I follow his lead, we dive deeper into areas that interest him and skim over those that don't. I don't need to test because my observations guide me on areas he needs more work on. I'm not trained to be a teacher...but could you imagine the wonderful things that could happen if a great teacher was given that freedom. The things our children would learn...the experiences they would have...the learning that could take place. I feel our schools do really well with the Danielle's of the world, those children who learn easily and test well. But we are missing the boat on the gifts our children like Ben and Sam have. They require those really great teachers who are going to figure out how they learn, embrace the differences and are ready to see the amazing outcomes.

Sam has required me to rethink so many things I thought I understood...and to change. I never struggled with school, it was easy for me as it is for Danielle. When I started to homeschool I tried to take my school experience and make it work for Sam. It didn't. He didn't like my well thought out lessons plans. Sam fought me tooth and nail. If Sam was going to work with me he wanted it to be fun. If Sam was going to work with me he wanted me to be available when he was ready. I have learned to incorporate puppets, throwing things, physical breaks, music, toy play, magnets and I never ever refer to it as work. Our schedule is flexible and I have come to realize that I am on Sam's time...not mine. I keep track of those things that work and try to re-create them in other areas of study. I have learned that what Sam doesn't like now doesn't mean he won't be ready for it at a later date...thus the ever growing Rubbermaid tubs of homeschool stuff that exist throughout my house. Sam requires me to be "in the moment" not typing on my computer or talking on the phone, not watching TV or doing a household chore without him...but instead to be there with him...listening, talking, being. I think Sam picks up more from our playing together, building puzzles, travelling, card games, chores, going to the zoo or other community field trips...then any of my scheduled lessons.

Sam has taught me the value of all people. I spent a lot of my younger years critiquing other peoples strengths and weaknesses. As I have gotten older I find myself critiquing my own strengths and weaknesses and now appreciating how we are all different and learning to embrace those differences. What Sam doesn't say is expressed so eloquently in his expressions and actions. I love and appreciate how Sam perceives his world. His reactions are pure, he has no buffers or shell, he isn't afraid to express himself, he chooses not to judge or be judged. He radiates love, joy and an appreciation of e v e r y t h i n g.

Like Sam...I am not worrying about the future...I am living in the day. I will strive to enjoy my time here on earth. I will strive to be present, available, loving and lovable. I am looking forward to each and every day! Good night everyone!

It's Good To Be Home...I think!!!

Now don't get me wrong...I love coming home. But when dealing with Sam there are times when it is comforting being in the hospital. Let me try to make sense of things.

At the hospital I know Sam has access to anything medically we may need...oxygen, pep treatments, medications, IV's, medical equipment, pulmonary experts, way too many lab people (sorry lab techs but it's like being a human pin cushion), doctors, nurses and so on.

And even though I know all that is available I still never rest easy in a hospital. It could be the control freak in me coming out...one of my many faults. I have had good experiences and not so good experiences in the hospital with Sam...but to me each one was another learning opportunity, another piece of the puzzle which is my Sam.

Back in 2005 we had a bad experience which landed us in the ICU. Sam was misdiagnosed with asthma and an aggressive asthma protocol was followed. Sam reacted poorly and his condition got worse instead of better. We spent a couple of days in the ICU. Now even though that was a bad experience I learned how Sam adversely reacts to Albuterol and steroids. We learned that less is more for Sam and a slow and steady path is our best route of treatment. We pursued further testing to find out what Sam's specific respiratory issue was. There was good that came from a very bad experience.

Also from that experience I took on a much more active role in Sam's medical issues. I no longer have that unconditional trust of doctor's or medical personnel. I learned that doctors are truly practicing medicine and as they practice they also make mistakes. I began to view doctors and nurses as people just like you and me but with more medical knowledge...however I'm the expert on Sam. That doesn't mean that I am going to tell a doctor or nurse how to do their job but I will advocate for Sam, I will let them know what works and what doesn't, I will read Sam's non-verbal cues and let them know how he is doing. I will try to put myself in Sam's shoes and do the best I can in addressing what his concerns and needs might be. I will ask for pulmonary, orthopedic or any other specialty consult if I don't completely agree with a doctor's orders. I will probe, I will question, I will research, I will learn and understand the medical terminology, I will get second and third opinions.

With all that said I absolutely respect the role doctors and nurses play in Sam's life. I am the first to thank or acknowledge a doctor or medical professional that has met or exceeded my expectations. I want to build strong relationships with Sam's doctors and nurses. I respect them as professionals and people and I simply ask that they respect me as Sam's mom and the person that spends the most time working with and loving him.

My unrest in the hospital comes from the necessary shift changes in personnel. While I understand that nurses and doctors can only work so many hours a day it still becomes a little unnerving when I have to meet, introduce and educate so many people on Sam. I love when I get a repeat nurse or nurses return from one shift to the next...it comforts me to get to know those people who are helping me with my child. I can't imagine how difficult their jobs are as they meet new parents and children on each and every shift. Every child, every parent, every situation is different. I utilize Sam's pediatrician as my overall medical expert on all that is Sam. If I have difficulty in the hospital, Sam's pediatrician is my go to person to help coordinate a successful outcome. I do understand that some medical personnel like to talk to other medical personnel when it comes to making decisions about my child so Sam's doctor becomes that contact in those situations. I also understand that there are policies and procedures that have to be followed in a hospital situation and I ask Sam's pediatrician to listen to my wants or concerns and coordinate with the hospital. I carry with me a signed Emergency Information Form For Children With Special Needs (a blank copy can be found here, www.aap.org/advocacy/eif.doc) and a copy of Sam's respiratory report. I don't want anyone guessing about things we have already figured out with Sam. I understand and respect the fact that Sam's hospital file is thick and a doctor does not have the time to review everything so the medical information sheet and respiratory report gives them the important information up front.

Another area of unrest for me is the grey area of care and responsibility in the hospital. Ultimately I believe that as Sam's parent he is my responsibility 100% of the time...but hospital situations cloud this area. Yes I understand how to best work with Sam in certain situations but that does not usually include taking blood, putting in an IV or making him cooperate during medical procedures...I don't have to do those things at home with him. If Sam is coming to the hospital because of an illness I have often been awake and dealing with him for days before...so there is a fatigue factor on my part. Now add to this the changing personnel and things get cloudy for me. As I walk through the hospital I can't help but notice how many children/infants/toddlers are there by themselves. I feel sorry for these children...I try to rationalize that the parents may have to work or something critical is keeping them away from being there with their child...but my heart still hurts for these children. I also realize that if a parent isn't in the room the nurses are responsible for 100% of that child's care. But with me being in the room, what % are they expecting me to do? Does that % qualify me as a good/bad parent in their minds. I have watched Sam pull his leads off and throw them on the floor. The medical equipment is quickly registering that Sam no longer has a heart beat nor is he breathing. Alarms sound but I don't see anyone rushing in to check on him and I have even had times when the staff has just called in on the speaker to ask if everything is okay. I've wondered...is this the same policy followed if a parent is not in the room? What if something happened to me? What if I left without telling my son's nurse I was leaving? How long would it take for a person to check on Sam's situation? This is one of many reasons why I stay with Sam. Add in Sam's sensory issues, limited verbal expression, hearing issues, allergy and medication issues and we could have a potential prescription for disaster. But I struggle with the percentage of care. I actually am happy being 100% involved with Sam's care but when I am dealing with lack of sleep issues that commitment becomes a challenge. I try to let the nursing staff know where I'm at but I often get a mixed reaction. Some seem to understand and help as much as they can while others seem to not care and have no problem waking me to assist my help with Sam. And then there is that question of if I don't assist are they questioning my commitment to my child and honestly thoughts like this can become much larger in a sleep deprived mind. I also wish I could just sleep when Sam sleeps but my mind doesn't shut down in the middle of a respiratory distress situation. I am still monitoring the beeping, how he looks or acts and that keeps me focused on his situation instead of sleep. Now let's add in the plastic, hard recliner with the added comfort of the crispy, plastic, sweaty pillows and it isn't exactly a prescription for restful sleep. Oh but wait, I could also stretch out on the hard, plastic, too short for the average person pull out couch that never seems to pull out flat. I think I would pay an upcharge for a down comforter to go on either of these items to make them just a wee bit more comfortable.

I also want to take a minute and talk about the nurse call button. You press the button, wait for someone to ask you what you need and then wait for a nurse to appear when she is available. I often wish there was a general call button and a 911 emergency button. A general call button is great for an IV pump that is beeping, I need a blanket or towels, can I schedule a pulmonary consult...a 911 emergency button is for Sam is choking, gasping and about to pass out, Sam has pulled out his IV and I need help now and Sam's oxygen stat is dropping fast. Each of these happened and response time was not exactly quick enough for my liking. I handled getting Sam back in bed and comfortable without nurse assistance, I had to wait for assistance with the IV which led to an IV intervention (as I like to call it) 5 people for 1 child's IV. It's like they sent the best of the best with special vein lights, well versed in working with a child with special needs, quickest IV placement ever and I wanted to say, why doesn't this happen every time...can I request this dream IV team??? I handled the low oxygen stat by turning up Sam's oxygen myself until he was at a favorable level and then letting the nurse know. I hook and unhook Sam from machines, turn them on and off to go to the bathroom or help him take a shower, I often times administer medication or a breathing treatment if the person is tentative or unsure of how to proceed with Sam. Maybe it's just me and my control issues but I think many people who have not experienced hospital stays with their children are under the misunderstanding that while your child is in the hospital the nurses and doctors do 100% of everything and you can just rest and observe. Hmmm...nice dream but certainly not my reality.

While Sam was in the hospital he received 4 different types of antibiotics as they tried to determine the other virus Sam was fighting and if his pneumonia was bacterial or viral. As a knowledgeable parent I know probiotics should be given when antibiotics are given. Hmmm...why wasn't that a suggestion at the hospital? One caused an itchy skin rash to appear on his thighs. So benadryl was administered to help with that allergic reaction. So, Sam was taking 4 different antibiotics, two types of breathing treatments and now benadryl. I'm convinced that Sam's immune system issues stem from his unhealthy gut which was destroyed by IV antibiotics in his first year of life. I can't help but wonder what further damage we have now done.

I watch all this closely because I know that Sam can sometimes get overloaded or his body will reach a point where the medications begin to become the problem and he turns a corner in the wrong direction. On Tuesday Sam began to react negatively to the pep/respiratory treatment...he sounded and felt better before than after they were administered. He wheezed after receiving the treatment and his hyperactivity or OCD type behavior was rapidly increasing. That's my cue to intervene, ask for a doctor consult which normally leads to a pulmonary consult and then we change the protocol. But that doesn't mean it's a good time to take a nap because in 15 minutes respiratory shows up ready to do a pep treatment with both of the medications. You see the orders had not come through yet to drop the pep treatment and one of the medicines and use the other medicine as a regular breathing treatment.

Now do you understand my concern for those children here at the hospital with no one to advocate for them. No one watching for changes or medication reactions.

But let's talk about going home. Some of the hospital staff were not comfortable with Sam leaving due to his oxygen levels and the sound of his lungs. But when you have a more involved child you learn to take them home earlier and how to deal with the issues. I don't ever want to jeopardize Sam's health but you have to think about that in different ways. Sam was feeling better which means he becomes more difficult to handle in a hospital situation. Sam wants to get up and move, his sensory issues kick in as he feels better, the medications make him hyper and he demonstrates stronger obsessive behaviors....like getting the IV removed, removing the pulse ox, taking off his hospital bands, pushing or yelling at medical personnel to leave him alone. Sam also is immune compromised, the longer he stays in the hospital the more potential illnesses he is exposed to. Sam in known to double up illnesses as he did this time with pneumonia and another virus. I knew we needed to think about going home when I did try to take a nap and Sam proceeded to remove his hospital bands and his pulse ox and then woke me to let me know what he had done. I attempted to sneak out and get some food while Sam was sleeping. As I came back up to the ward, the nurses were chuckling and told me Sam was feeling better. As I approached his room I noticed the pulse ox strip laying outside the door that Sam had obviously removed and thrown there. I heard him calling "Mom, Mom, Mom...Sue...come here now". When I got into the room he was happy to show me his bare toe that was now free of the pulse ox. He had also rung for the nurse to let her know he removed it. Sam was beginning to feel more like Sam and it was time to go home.

At home I have things for Sam to do in bed, games to play, favorite movies and shows, music and toys. And yes they have toys in the hospital but it takes me 15-20 minutes to clean and sterilize each one so that my child with immune system issues can play with it and I still worry if I got all the germs off. At home I can get him moving his arms and upper body to help with his breathing by playing basketball, balloon tennis or using the Wii. Sam has more food options at home since his diet is limited by being gluten and dairy free and although the hospital has a nice offering it does not include all of Sam's favorites. Sam is happier and more cooperative in his home environment. At home he has his family that can tag team his care and meet his needs letting mom get some much needed rest.

Sam was thrilled to be going home, he did great as we wheeled him through the hospital but when we hit the outside cold air and he had to be loaded into the car the coughing began. As I drove it accelerated to some gasping at times. So now I'm driving when I have not slept much in days and I have a child exhibiting respiratory distress symptoms in my back seat. I struggle with the decision to turn around and return to the hospital or continue home. As I get to the north side of Milwaukee he suddenly becomes very quiet. I quickly pull over and not wanting to introduce more cold air I crawl over the seat to check his breathing, take his pulse, look at his nail beds and make sure he is not pulling in around his rib cage. Sam has coughed himself to sleep. I pray some more and continue my drive home. Getting Sam into the house causes another coughing jag but now I have the nebulizer and can quickly administer a breathing treatment. Sam does well but struggles to get the coughing under control. I put on his oils to assist with his breathing, start up the vaporizer and oil diffuser and pray these are going to calm his coughing down. They do and he seems more comfortable but when it is time to sleep he starts up again. I reapply the oils, adjust the vaporizer and begin to pray. I crawl into bed...after 4 days of little sleep I feel like I'm crawling into a cloud. My bed has never felt so good. I explain to Jeff how tired I am and that I almost feel like I'm losing my sanity...but Sam continues to cough. Jeff begins to pray and I begin to plead with God for help and comfort allowing Sam and I to get some much needed sleep. God answers and Sam begins to settle down and falls asleep. Jeff is now feeling all the emotions and worry that comes with taking care of Sam as I begin to drift off to sleep. He knows that I need sleep and yet he's terrified on what the evening may hold. We are both thrilled that Sam continues to sleep well with an occasional cough here and there. Jeff and I take turns getting up and checking on him in the room attached to ours.

The next morning Sam wakes up coughing and gasping again. Mornings are always tough on respiratory kids. Everything settles, your respiratory systems gets dry and inflamed and you work twice as hard to work through everything. I immediately give Sam a breathing treatment and I see him relax. I talk him through slowing his breathing down and he begins to respond. I offer him some ice cold water and when he asks for ice cream I don't hesitate. Sometimes ice cream can do wonders to cool, comfort and alleviate the inflammation in Sam's airway.

Sam looks good but has some dark circles which I call his pediatrician about. The pulse ox is ordered and on the way. I will continue to monitor Sam's oxygen stats. Sam is happy, smiling, and tells me over and over "It's good to be home". I know we are not out of the woods yet. Sam's mobility is further decreased with his pneumonia and he will have to take it easy and we will take it one day at a time. Sam had a good day at home and he went to bed easily and with little coughing. I feel better about being home. I am still exhausted today but I know that I will regain my energy as I get to sleep on a more regular basis and right now that pillow,....er bed, is calling my name. Good night everyone!

Reflecting and Praying!

Wow, 2010 was an amazing and again challenging year. I'm pretty sure that God doesn't want me to get bored....honestly.....a little boredom would be appreciated. REALLY...I would be okay with that.

But when I look back on the past year I have so many positive things to reflect on. When a new year begins I always find myself looking back further than just that year, I tend to reflect on the progress I have seen through the years. This crazy journey I am on with my children requires me to always reflect on where we started and to appreciate just how far we have come. That reflection allows me to remain positive and focused as I start each new day.

Benjamin will turn 16 on January 23rd and he is hot on my case to set up his driver's test. Where did the time go?? I still look at Ben and see the little boy that felt the need to use his tools to take apart everything in my house. Ben was never happy until he had taken something apart, figured out how it worked and sometimes made it work better and other times just smashed it to bits. Hmmm, funny...some things never change. I was just looking at pictures on Facebook of his Rhino, the truck he bought when he was 14 that got rolled at J & H and his current love, the monster diesel that has caused the UPS man and I to see each other more than I thought possible. I used to get excited thinking someone sent something to me or something I ordered came in from Land's End but now I seem to only get packages from www.puredieselpower.com. Don't even get me started on the dating...still taking deep breaths to get through that.

Ben as a child always had unlimited energy and a never ending stream of questions which some felt was ADHD and that medication was a must. But I never went there...although the year I homeschooled him I was tempted. Instead my mind just kept telling me we had to help him learn how to use that energy productively and I had to come to terms with the fact that I was going to hear the word "Mom" a minimum of 1,000 times a day. I needed to learn how he learned, what worked and what didn't so I could help him and those that worked with him. I still chuckle to this day when I see Ben skip across a room because he is excited...it was always like a little release of stored energy. I have been negotiating with Ben since he was three and I often feel that he just gets better at it and I get....well, more tired. Ben and I have a point blank relationship. He has never held back in letting me know what he is thinking or how he is feeling...I just wish sometimes he would curb his impulsiveness and comments so we could have a productive conversation instead of an explosive one but I understand the need to let off some steam too...it's just part of having an intense personality. I have always preferred that his outbursts be with me and not at others...because I love him, I can forgive him and I know the outbursts are often due to his feeling challenged or misunderstood. I walk a fine line with Ben trying to help him advocate for himself and at the same time motivate him to try harder.

I look at Ben and remember the frustrated little boy and the long hours of homework as he struggled to focus and as his struggle with reading, writing and spelling threatened to destroy his self esteem. We have come so far. I rarely have to do homework with Ben, we still team study for exams and I sometimes help him organize larger projects but he is doing well and has maintained his ability to remain in the regular curriculum without LD or special ed help. He is a fighter and I am so very proud of him.

And then there is Danielle, my sanity child...my ray of sunshine. She has an innate gentleness and kindness about her. She has always shined bright even when the attention on her brothers seemed to be greater. I have to remind Jeff and myself that she is a gentle soul, unlike her brothers more powerful personalities and she requires gentle persuasion. In recent years she has come into her own, able to stand up to Ben and put him in his place while getting Sam to do as she asked within a count of 3. Danielle makes me laugh, she and I are kindred souls and enjoy spending time together....of course sometimes during our road trips we all need a little space but really...who wouldn't after being locked in a van together for 10-15 hours at a time. We pick on each other and we laugh a lot. She is simply an amazing personality and I know God sent her into my life to help me maintain some sort of balance. Ummm...good luck with that Danielle.

Danielle is my sports playing, Zumba queen. She is so much more coordinated than me and I know she is going to do great things in this world and continue to be happy. Jeff and her share a special relationship since he is the driver to most of her practices and games. Don't even get the two of them started on John Tesch...they are addicted to his radio show...I get to hear so many random pieces of wisdom. Danielle was an amazing baby and toddler and she just continues to grow and develop into a wonderful, dare I say...teenager. I love you Muttsy!

And Sammy...my amazing big guy. Oh, the lessons you have taught me through good times and bad. I still think about Sam on our road trip this summer climbing mountains, hiking for hours and never ever complaining that his hip hurt...but it probably did. This little trouper went on to learn how to ride his bike, I just watched the video the other night when I was feeling a little sad. He worked so hard to achieve that goal and took such pride in showing everyone what he had accomplished. As I watch the video I can't help but notice how stiff his left hip looks...didn't notice that when we were in the moment. And now as Sam is in his 5th week in a full body brace he continues to amaze me with his compliance and attitude. I would not be this great of a patient and yet he greets me every morning with a smile and a hug. We are quite the pair in the morning, him in his body brace and me struggling to bend over for a hug because my back is so stiff.

I am thankful for the amazing road trip we had this summer, its memories have helped me get through the rough times. As I look at the pictures I smile at the happy times and relive the adventures we had. God surely set that trip up knowing what the next couple of months would bring.

The other night I watched a video when Sam was 3 or 4 and he only made sounds that we hoped would some day turn into speech. Sam still struggles with speech but he has come so far. He has tons of words now and many phrases to address his needs. I still wait and long for conversational speech, active listening and appropriate responses but I am encouraged by the steady changes I am seeing.

In Sam's 10 years he has had more struggles than most of us will face in our lifetime but he never lets that get to him. He just continues on with a confidence and attitude that all of us should learn from.

Ben, Danielle and Sam have taught me to change because that's all I really have control over. I determine how I talk, act and feel and in kind that determines how my children talk and interact with me. Ben's difficult situations challenge me to treat him the way I would like to be treated without bringing in the emotion or negativity that so often can take over our interactions. Both Ben and Sam love attention, but Sam is teaching me the power of positive attention. He requires me to place more emphasis on the things done right than what he attempts and is unsuccessful at. If I get frustrated he is more than happy to follow suit and just shut down. I am a work in progress and if I am tired or anxious I struggle to maintain my composure but I try to remember the lessons Sam is so desperately trying to teach me. I love you big guy!

I have never been a person that made New Year's resolutions...I instead make daily resolutions. I resolve to treat my children with positive attention and to be open to their level of communication. I resolve to focus on the positive aspects of my life and count my blessings. I ask the Lord to guide me every moment of every day...I can't do this life alone. I have often had people tell me I'm an amazing Mom and they don't know how I do everything I do...but if I'm honest...I'm just a regular person that has been put into extraordinary situations and by the grace of God, we get through.

This year I hope to open my heart and mind in order to continue my efforts in building community around Sam. Sam and I have been together since day 1, during hospitalizations, medical crisis, homeschooling and home therapy and everything that has been required due to his medical and immune system issues. We have been through a lot and we enjoy each other and work well together but Sam needs to learn how to interact and work with others too.

This is an issue that is so hard for me.

I get anxious when I see someone interact with Sam and he gets frustrated because they don't understand him. I get anxious when Sam won't show his skills and abilities and I worry that a teacher or therapist will lower their expectations instead of figuring out how to work with Sam. I get anxious when I see another child ignore or treat Sam differently. I get anxious that someone will miss a subtle change in Sam that is a red flag for me that medically something is about to happen. I get anxious that Sam will be overloaded by too much sensory stimulation and his behavior will reflect that. I get anxious that a child may run into and bump Sam causing him to fall on his fragile hip that has just been rebuilt. I get anxious that someone may not recognize that Sam's behavior is a pain reaction and not Sam being stubborn or non compliant. I get anxious that both children and adults will talk less to Sam because he is difficult to understand or he doesn't always answer appropriately. I get anxious that someone may perceive Sam's ability as low due to his limited speech expression instead of giving him other ways to express himself appropriately. I get anxious that someone will misinterpret a hearing issue as a cognitive issue. I get anxious that Sam will get frustrated and shut down. I get anxious that Sam will withdraw and enter his own world.

I...just....get....anxious...

because I love this little boy with all that I am. I will end with something I found on a fellow blogger's site, thank you Debbie at Finding Normal, http://debbie61497.blogspot.com/:

WHEN

When you are the neediest,
He is the most sufficient.
When you are completely helpless,
He is the most helpful.
When you feel totally dependent,
He is absolutely dependable.
When you are the weakest,
He is the most able.
When you are the most alone,
He is intimately present.
When you feel you are the least,
He is the greatest.
When you feel the most useless,
He is preparing you.
When it is the darkest,
He is the only Light you need.
When you feel the least secure,
He is your Rock and Fortress.
When you are the most humble,
He is the most gracious.
When you can't,
He can.
~Author Unknown

Counting My Blessings!

Yesterday I had an opportunity to sit back and reflect while my little warrior happily watched a movie from Netflix.

We are over one week through the process and life each day becomes a little easier. I wanted to take a moment and thank some of the people that got us to this point. To these people it may just be their job but the time and attention they gave to Sam made me feel they understood how precious this little boy is to Jeff and I. I told them as he went into surgery, "Please, please take good care of him, he means the world to us!" and they did!!

I will start with Sam's surgeon, Dr. John Thometz, MD. Thank you for helping me understand the diagnosis of hip dysplasia and Perthes and coming up with a treatment plan for Sam. We hope and pray that Sam's activity level will come back and maybe even increase without the hip issues. Thank you for choosing a brace instead of a cast for Sam, neither is an easy option but the brace allows us to keep his skin healthier and is easier to work with. It's funny as we were driving to the hospital nervous and anxious I prayed that you were getting ready and driving in well rested, healthy, happy and at the top of your game.

Thank you to Sam's anesthesiologist, Dr. Richard J. Berens, MD who was able to make me laugh minutes before Sam's surgery when my heart and resolve threatened to break in half. Thank you for listening to us, for ensuring Sam's respiratory system was safe and that he came out of anesthesia well. You were a blessing!

Thank you to Sam's critical care pulmonologist, Dr. Daiva Parakininkas, MD who worked with us before, during and after to make sure that Sam's upper respiratory system was understood and safe. Thank you for your advice, consults and care! We are so happy to have you as Sam's pulmonologist.

Thank you to Sam's pediatrician, Dr. Dirk Steinert, MD. who has never failed to amaze me with his concern and devotion to Sam. Thank you for allowing me email correspondence, your cell phone number in case of emergency and agreeing to come see Sam if he becomes ill. You are truly one in a million and Sam and I appreciate how you have touched our lives. I hope the student doctors that work with you pay special attention to the relationships you have developed with your patients and their families. You are remarkable.

Thank you to the many nurses and assistants that helped to take care of Sam during and after surgery. From the operating room to the ICU and to 10 West, each of you helped make a very difficult situation easier. We had excellent nursing care with attention to both Sam and I, they were not just doing a job they were taking care of us.

I don't have the nurses names from the ICU, sorry kinda a hectic day for me. But I would like to personally thank Annette Husske, Veronica Weber RN, Laurie Minkley, Jodi Novak RN, Richard Haasch RN (and Joe too), Kristy Garven, Sandra Jardarski RN and Heather Bailing RN. Sam and I appreciated your devotion and care.

Ooops, forgot a very important someone. I would like to thank Caz from Hanger Orthotics for fitting Sam with his brace, tweaking it and checking up on him. We will see you on Friday. Just to let you know how above and beyond Caz will go, he is meeting us in the ambulance outside the hospital to check on Sam's brace and make any adjustments needed. You rock Caz!!!

I have to add a special thank you to another team of people that helped us with the coordination of care, medical equipment needed and helped us to get home. Thank you Julie Desorcy, RN who went above and beyond in helping me get everything needed for Sam's home care and was the go between of the doctors and staff to make things happen during our stay at the hospital. You wear your heart on your sleeve and we could tell Sam was important to you. Thank you!!!

Thank you to Robyn Treder, RN who had to jump through hoops to help coordinate all our equipment needs. Your patience and coordination skills amaze me. You were a blessing to us. Thank you to Kathy Fogl of the Aurora Visiting Nurse Association for all your help coordinating and training me on the home equipment and helping me locate other items to make Sam's care easier.

This took an amazing team of people and I could not have asked for a better team.

Now that we are home, I want to thank our visiting nurses, the follow up from Children's Hospital, MY MOM (I love you and you are a life saver), Sam's family that have checked in by personal visit, phone calls and email, Grandma & Grandpa Mayer who have provided a freezer, food, meals and friends who have offered help and meals. Thank you to Debbie Jackson, Julie Mayer, Katie Unti, Dave Boldt, Randy & Linda Buser, Jamie Rismeyer and everyone who has offered and helped with Sam's care. Thank you to Susan Carneol for her gift to Sam and Rep. Assoc. for bringing some poinsettia joy into Sam's room. Thank you to everyone sending cards and letters to Sam, he has just started to read some of them and we will be starting our Google Earth study next week. Thank to everyone who has emailed, commented on the blog or contacted us.

WE ARE BLESSED!!!!

Life is Turning Around...Thankfully!

Sam has had two good nights...Hallelujah! I have had some sleep and feel slightly human again. Last night was Sam's oxygen study. We used a special pulse ox to monitor his oxygen while he slept. The read out from the pulse ox will be looked at by his pulmonologist and hopefully...yes hopefully...we can remove the need for oxygen. Sam would be thrilled to never wear an oxygen cannula or pulse ox on his toe again. Which led me to a moment of reflection...to my fellow moms with children that are more medically involved, more so than Sam, I pray for you each night to be given the strength, peace of mind and ability to go from day to day. I know we call you the supermom's and you are...your dedication to your child is at a degree most people will never ever experience.

Even with Sam's multiple issues I would often chuckle or sometimes get aggravated with a parent that would be complaining about how their child didn't make the varsity team or wasn't on the honor roll or may not go to college or how it is not fair that their child couldn't...followed by something that seemed so trivial to me in the grand scheme of life. Really, honestly....if that were my biggest worry, I would have it made. But as I reflect today I realize we are all on a continuum and the experiences in our lives, our attitudes and our gumption determines where we fall on that continuum and how we deal with it. If your life has had few challenges, something like I mentioned above could seem to be devastating but if your life has presented you with challenges your reality of what is difficult has been forever expanded and changed. I have to remember that when Sam entered my life I like the parents I mentioned above was devastated, it wasn't fair...how could this be??? But as Sam and I have travelled on the path less taken I have opened myself up to learning new things, experiencing different and either rising or not to the challenge, but always, always learning and feeling. These past few days make me again appreciate the blessings that I have with Sam, hip surgery is difficult but at least his hip could be worked on and hopefully improved, having Sam on oxygen was tough but at least he can come off of it, total care for Sam is challenging but this is only for 6 to 8 weeks...do you see what I mean??? In all of this...I need only look at Sam. His smile is back, his personality is returning and I thank God for the blessing that is simply Sam. The fact that God entrusted me with him and that God continues to guide me on this journey. I have often wished I knew God's plan for Sam and if I am being totally honest I have often questioned if there really was a plan??? But with each challenge I have learned so much and I have had the opportunity to meet more amazing people and families and share Sam with them.

A while back my sister-in-law provided hospice for her Mom. She described the experience as one of the most fulfilling things she has ever done. Hmmm...not the picture that came to mind when I think of hospice care. She didn't focus on the day to day challenges but instead she focused on the lessons and life changing experience that comes with spending time with someone who's time is limited. My last couple of posts describe the challenges of major surgery and I want people to know that a situation like this is "no walk in the park" and I'm not going to sugar coat it....but like Martha, each day I feel privileged to spend this time with Sam, to help him, to take care of him and to never ever forget to enjoy him. What challenges us...build us. Sam is just adding some more mortar and bricks.

Today, the challenges are still there but Sam and I are going to focus on enjoying our time together, more focus on the us and less on the process. Breathe...Life is Great!!!!

It Usually Gets Worse Before It Gets Better....Right???

Our second night was even more difficult than the first. ARGH!!! Sam required oxygen and his desaturations without it went into the 80's, sometimes lower. So we got the oxygen on but Sam decided he was ready to do battle. My feisty little warrior, (aka Houdini) seemed to work out of every configuration of hand restraints we could come up with. Every time he could get enough movement he would add twisting his upper body and would pull his oxygen off. If that didn't work he creatively figured out how to move his head enough and while using his tongue to assist he would remove his oxygen, setting off the wonderful beeping followed by the struggle to again get his oxygen on and regain positive oxygen stats. Wouldn't you think all the fighting would just naturally bring up the oxygen level...I'm praying that is what he is working on.

I took the first shift of the evening, Ben took over to allow me some sleep at about 10:30. By 11:00 Ben was done, patience gone, so I stepped in. Sam drifted off to sleep but then woke two hours later to start the fun again, Jeff jumped in but Sam had him so worn out by 2:30 p.m. I think he was considering wrapping tape around his head to hold the oxygen on. I stepped in again...knowing Jeff was going over the edge and Sam needed his pain medication. A few hours of sleep and we were up again, and again, and again... Needless to say I managed to get through the rest of the night but the lack of sleep and stress finally took it's toll at about 10:00 a.m. when I snapped at everyone around me as I was desperately trying to get Sam to poop for the 9th try with no luck, Jeff brought me Children's Pepto Bismol and hemorrhoid suppositories instead of the stool softener and glycerine suppositories I had asked for because he didn't ask for help at the store so I broke into tears, said a few things I should have never said in my life and generally felt like a failure. Oh crap, this is hard!!

The night schedule really messes up the day schedule which includes: Sam's pain management, incision management, monitoring his oxygen level, changing the pulse ox every 4 hours, turning him every 2 hours, respiratory exercises every half hour, feeding him, massaging his legs, bathing and toileting (which includes desperately trying to get this child to poop). I have never prayed for poop...but I am now.

I am trying to keep my focus on Sam. This is no walk in the park for him and everything I'm going through can never equate to what he is dealing with. But when you're Mom and your focus is only on one thing the balance of the home goes completely off kilter and the snowstorm only added to the snowball effect that was already occurring in our home.

We regrouped, Jeff went back to the store and asked for help this time, Danielle jumped in without the complaining this time and I washed Sam's hair and bathed him, then took a much needed shower myself, had some wonderful pancakes that Jeff made when he came home and took a 3 hour nap while Danielle sat with Sam. I once again felt human and then had to apologize to everyone who unfortunately was damaged by my breakdown earlier.

We sat down and enjoyed a wonderful zucchini lasagna dinner, a little garlic bread and some fresh/frozen green beans from the garden that my sister had put into our freezer, we talked over our frustrations and options, prayed, and came up with strategies to cope as we go into yet another night. Sam loved the zucchini lasagna and finally ate a pretty good sized meal.It will get better, when his lungs gets stronger, his pain less and his ability to work with us more. Life right now is challenging but we will work it out. I also want to thank the Schlenvogt family for their care package of food, it was enjoyed by all. Thank you to Grandma Mayer for keeping the rest of the family fed while Sam and I were in the hospital and for having a welcome home dinner prepared for us. We are very blessed with a wonderful family and amazing friends. WE LOVE ALL OF YOU!!!

We have had numerous friends and family offer help. Never knowing what each day is like it is hard to determine sometimes where help is needed. During the week Grandma (God bless this woman's soul) will come over to assist. On the weekends, Ben and Danielle would be happy to have additional help which would allow their schedules to free up. For those of you who offered a meal, we do have a large freezer in the garage (thank you Grandma and Grandpa Mayer) or if you would like to bring something over hot please call and let me know that morning. Sue Waldkirch I will need you to make a grocery run for Sam to Slow Pokes this week. From everyone I ask for continued prayers. I want to thank everyone for their emails and comments here on the blog, as much as I would love to respond to each of you I'm sure you can guess from the updates that just isn't possible at this point. I never even got to send out "Thank You's" from Sam's birthday party but I hope everyone knows how much that day and the gifts were appreciated. I want to end this post with a passage I received from another family member Chris Russell, which gave me a wonderful sense of calm this evening:

Philippians 4:6-7 " Don't worry about anything; instead , pray about everything; tell God your needs and don't forget to thank him for his answers. If you do this you will experience God's peace. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ Jesus."

Happy Birthday, Sam!!!

Today is Sam’s birthday and he is 10 years old. Where did the time go? What an interesting and amazing journey we have been on and continue to be on.

When Sam was born he changed my world. I had a plan for my life and I was happily in the middle of it. I had gone to college, established my career in Marketing Communications, married the love of my life, began my family and as I looked into the future…I had it figured out. I would gear back my career while my children were little and when they were in school I would again jump into my career where the sky was the limit and I would excel.

Hmmmm, but then Ben began to struggle in school (not part of my plan). I had to regroup, rethink things…so I decided I would have to wait and help Ben while he was in school. Okay, it would be harder to jump back into a career with that much time away but I figured it was still doable.

Danielle was my happy go lucky little girl. She was a happy baby, toddler and jumped into school without any problem. She was my athlete and I had to shuffle my schedule for her practices, games and activities but life was going along great.

And then along came Sam. I had always wanted 3 children. When I was little and played dolls, I had 3 children. Now…I can say that Sam’s arrival changed my world and it was a shock but if I’m being honest…and as I reflect on my life today….God was preparing me. From little on I knew I would have 3 children. Upon the birth of my first 2 I had an overwhelming need to give thanks and give back for the blessings given me by these two children. I volunteered my time at Make A Wish and the Ronald McDonald House. I became familiar with Children’s Hospital, special needs children and was in awe of the many families I met that were on a journey very different from mine and yet I felt we were so alike.

Ben introduced me to the world of learning issues. I began to realize Ben learned differently and we struggled as we tried to figure out how to help him but I was always amazed at his strengths. Ben looked at the world with a level of detail I could not even imagine. We could walk into a place and Ben would always remember so much more, down to the very smallest detail than I could have ever hoped to. Ben taught me how to work with him and that teaching journey included yelling, crying, frustration, feeling hopeless at times, jumping into homeschooling and a whole lot of prayer for guidance…but we have come so far. Ben is a sophomore at our public high school and he requires less and less help from me. We have found the path that works for him…it is not without its hills and valleys but he is moving forward.

When Danielle was born she seemed to give me my balance back. Here was this sweet, kind, caring and happy child that just flew through school with ease. I’m pretty sure when I was little and playing with my dolls I had all Danielle’s. She is my “ray of sunshine”, she is one of my travel partners, she has watched me work with both Ben and Sam and has never felt slighted. She loves and hates her brothers just like any sister would. She certainly doesn’t give them any leeway or treat them as different…well except for her soft spot for Sammy (sorry Ben, you don’t seem to have a spot…she would consider you more of like a rash??).

And then along came Sam…as stubborn as Ben, as creative as Ben, able to get in the same trouble as Ben, happy and caring like Danielle, smiling and laughing like Danielle and yet so very different from both of them. Sam’s journey has not been an easy one. His multiple diagnosis and medical issues have all been a journey of their own…but they don’t for a moment take away from who Sam is. Sam is an amazing little boy that has captured my heart, changed my life, re-directed my goals/career and has challenged me to re-think everything I thought I knew. Today I realize that my original life plan was okay…a little generic but I would have made it work…but now my life is full. I enjoy my time with Sam…him teaching me and me struggling to teach him. Sam has strengthened my faith in God, he has challenged me to be a better person. Over the years I have had to really look at myself, my strengths and my weaknesses, my thinking and my beliefs and I often failed the challenge. And with every failure/challenge and break through is another lesson learned. When I used to volunteer at the Ronald McDonald house I would often see a family going through a challenging episode in their lives and I would think to myself, “how are they continuing…if that were my child…why…how is this going to change their life…what does the future hold for them…what would I do??” Sam has forced me to answer each and every one of those questions.

I never signed up for this journey…I never thought my life would have taken these turns but I’m not unhappy, I’m not miserable…I embrace each day and I simply love my children and my life.

Tomorrow is yet another twist in the journey. My heart hurts for the pain and discomfort Sam will have to go through to have his hip repaired. My heart hurts for my child. But Sam is challenging me again, to get him through this, to not let this define him. As Sam’s mom I have learned that no matter what diagnosis/illness/challenge we encounter…we will not let it define who Sam is or our lives. It may interfere, cause us to re-group, re-think but we will get through this too.

Sam, I love you. I love the way you smile and the way you laugh so I have to laugh with you. I love the smell of your hair against my cheek when you give me my daily hugs. I love running my fingers through your hair and tickling your neck. I love how you rest your hand on my shoulder when you have something to say to me. I love the never-ending, “Mom, Mom, um Mom”. I love how you say “Yesssss” with an elongated s sound. I love how a bad day for you can turn completely around with a diet Pepsi, or a trip to the movies for popcorn and of course, a diet Pepsi. I love how you react to things in nature, not just noticing them but becoming fully absorbed in them. I love how your face lights up when your Dad walks in the door and how his reflects yours. I love how you still smile and laugh in your sleep. I love watching you figure things out. I love how you seem to secretly communicate with our dog Buddy. I love listening to you relive your day as you go to sleep. I love how you walk with your very own swagger and the expression on your face when you run to get your ice cream. I love how you always say please and thank you. I love watching you sing "Happy Birthday" and blowing out your candles...at least twice sometimes three times. I love just being with you.

Sam, I simply love you! Happy Birthday, my big boy!!!

Please everyone, let’s get those prayers going. Pray for God to be with Sam and comfort him, keep him calm, help him to relax. Pray for his surgeon, his anesthesiologist, his pulmonary doctor and all the nurses and medical staff that God would guide them. Pray for Jeff and I to stay strong, to be comforted with the type of peace that can only come from the Lord our Savior. Pray that Sam comes out of anesthesia well and that he adjusts to his brace and is ready to come home in a short period of time. Pray that we are all able to come together at Christmas and give thanks for the greatest gift of all, the birth of Jesus Christ.

Ooohhh, Sammy!

All I can say is Sam is a trouper! He has had a virus since last week which seemed to get worse in the last couple of days. I took him in to see his favorite doctor (and that is a compliment if you realize how many doctors Sam has) Dr. Steinert. Sam never tells you what is wrong. If you ask him the standard answer is "All better". But with Sam it has always been diagnosis through observation. Sam is rubbing his face, his eyes are gooey, he refuses to wear his hat with his hearing aid, he is running a low grade fever, his tongue is out more than usual, his breath is nasty and he overall sounds gunky but he's laughing, smiling, walking around and still managing to do some of his homework with me. His personality and overall demeanor is excellent. Sam is having hip pain from his Perthes and now...he has a sinus infection too.

I don't know about you but a sinus infection makes me curl up in bed and not want to relate with the world and yet this little guy...all I can say is "Wow". He's limping and he looks kinda beat up but look at that smile.

He's lounging on the hospital bed we recently moved into our parlor, as we prepare for his upcoming surgery. Look at the position of that right leg...and then I wonder why he has hip dysplasia???

I recently took part in a Perthes chat group with Dr. Shawn Standard an expert in the treatment of Perthes and hip dysplasia. Here is his bio for anyone looking for help with their child's hips or limbs:

Dr. Shawn C. Standard is Head of Pediatric Orthopedics and the ICLL (International Center for Limb Lengthening). Originally from Atlanta, Georgia, Dr. Standard came to the ICLL in 2003 from the distinguished Nemours Clinic in Jacksonville, Florida, where he started a combined general pediatric orthopedic and limb deformity clinic. He earned his medical degree in 1995 at the Medical College of Georgia in Augusta. He completed his orthopedic residency training at the Medical College of Georgia in July 2000 and a fellowship in pediatric orthopedic surgery at Nemours, concentrating on general pediatric orthopedics with a special interest in limb deformity correction and limb lengthening. At the ICLL, he has established a clinic with concentrations in pediatric limb deformity correction and limb lengthening, clubfoot and other congenital deformities, general developmental disorders of the pediatric musculoskeletal system, and pediatric orthopedic trauma care. Dr. Standard has special interest in radial clubhand, Perthes disease, and congenital leg length discrepancy. Dr. Standard is married and has three children. His after hours job is coach of his son's pee wee football team. Dr. Standard donates one week of his vacation each year as a volunteer orthopedic surgeon at the Caribbean island of Grenada and the Dominican Republic.

Pediatric Conditions Treated by Dr. Standard

Dr. Standard helps children who have a variety of orthopedic conditions:
Lower Extremity Conditions
Perthes disease and avascular necrosis of the hip
Achondroplasia and other forms of dwarfism
Fibular hemimelia (absent or short fibula)
Congenital femoral deficiency or proximal focal femoral deficiency (short femur)
Tibial hemimelia (absent or short tibia)
Limb length discrepancy (this occurs when one leg is shorter than the other)
Short femur, tibia, or fibula
Blount disease
Ambulatory cerebral palsy (deformities and contractures)
Nonunions and malunions (this occurs when a fractured bone does not heal correctly)
Hip deformities
Hip dysplasia (congenital or developmental)
Knee or patellar deformities
Knock knees (genu valgum)
Bow legs (genu varum)
Joint contractures (e.g., pterygium syndrome, arthrogryposis)
Foot and ankle deformities
Bone infection (e.g., osteomyelitis, bone defects)
Slipped capital femoral epiphysis (SCFE) and femoral acetabular impingement
Congenital pseudarthrosis of the tibia
Growth arrest
Bone tumors
Metabolic bone diseases
Fractures of the bones in the legs

Here is our chat:

Sue Mayer: Hi Dr. Standard, Sam is going to be 10 years old in December and has Down syndrome, a brain injury, apraxia, dysphagia, respiratory/immune issues, bi-lateral conductive hearing loss and now Perthes. I emailed Sam’s x-ray a week or so ago. I wanted to hear your opinion of the x-ray. Sam is currently scheduled for a femur varus derotation ostetomy and a possible dega osteotomy. Sam will be in a Newport Jr. Hip System for 2 or more months after the surgery. I am worried about a lot of things but wanted to hear your opinion and what are the options if a leg is shorter than the other after the surgery?
Dr. Standard: Sue- let me check email
Sue Mayer: Okay.
Dr. Standard: Sue- has Sam had any other hip surgery in the past
Sue Mayer: No
Dr. Standard: the xray is just of his left hip- how is his right
Sue Mayer: His right is also shallow with some of the same choppiness but no signs of Perthes
Dr. Standard: Sam has a very complex and special situation (do you hear my heart breaking yet again)- he has severe dysplasia of the hip joint with subluxation / dislocation of the femoral head and changes consistent with avascular necrosis (perthes)- this type of hip configuration and correction is very complex- I am performing a surgery just like this next week on another Down's patient
Dr. Standard: the perthes / avascular necrosis is secondary at this point to the hip position / configuration
Sue Mayer: Is the surgery you are performing the same as the doctor is doing here?
Sue Mayer: Do you agree with the surgery our doctor is proposing?
Sue Mayer: By the way, everything about Sam is special and complex...that I understand.
Dr. Standard: similar-use a different approach that we use for a complex congenital femoral disorder patients in order to reduce the hip - the bone work is similar- I also plan an open reduction of the hip joint to tighten the capsule- unfortunately, the laxity in Down's syndrome can always defeat you-
Dr. Standard: Since there is the presence of avn / perthes- I would consider a small diameter core decompression at the same setting to speed the healing process of the femoral head
Sue Mayer: Will my doctor know what that means, because I don't think I do?
Dr. Standard: concurrently- early and gentle range of motion will be needed - NO Cast
Sue Mayer: They are not casting him, he will be in the Newport Jr. Hip System.
Dr. Standard: maybe- I would be happy to discuss his case with your doctor-who are you seeing now
Sue Mayer: Dr. Thometz, Head of Pediatrics for Children's Hospital Milwaukee Wisconsin
Dr. Standard: I do not know Dr. Thometz personally- would be happy to discuss ideas if it would help- but I think at this point, I agree that the main issue is to reduce the hip and reconstruct the hip cup
Sue Mayer: We are trying to move up the surgery from December 7th due to Sam tending to get ill as we get further into winter. What about the leg length issue?
Sue Mayer: reduce the hip and reconstruct the hip cup, Is that what the two surgery's proposed will be doing?
Dr. Standard: also secondary to hip position- first save the hip and then figure out an equalization plan for the leg lengths if it becomes an issue
Dr. Standard: yes
Sue Mayer: What do you mean by an equalization plan, I heard mention of an attempt to shorten the other leg, why wouldn't you lengthen a leg?
Dr. Standard: depends on the actual amount- lengthening can be performed but much more involved than a gradual shortening- meaning a slowing of the longer leg- also if you have a hip at significant risk - then lengthening in the face of a compromised joint is asking for trouble- need to weigh the risks and benefits when you reach that point- but that issue is down the road
Sue Mayer: It's a lot to think about for a very special little boy. I hope everything goes well and we are praying alot. Thank you for taking the time to review Sam's x-ray. I appreciate your input. I am done now.
Dr. Standard: take care and tell Sam good luck :)

As you can probably pick up from our chat...Sam's diagnosis is not a good one. This is not a quick fix. Sam will have the surgery and then be in the brace pictured below for two months or more as we wait for the top of the femur to grow back. Oh, except Sam's brace extends down to his calf on his left leg and he will have to remain in bed for those two months since he has balance issues and he can not put any weight on his left leg.

Sam will have to go through PT to facilitate walking again and may have one leg longer than the other. In a year he will have a second surgery to remove all the hardware. He will then have another surgery to shorten the growth plate of the longer leg. And this is if everything goes well.

His pulmonologist, Dr. Daiva (another favorite doctor) has asked that he be admitted into the ICU after surgery so she can monitor his respiratory system. Sam will be under anesthesia for 6 to 8 hours and he doesn't come out of anesthesia well. He will require help to clear his lungs and heal his already compromised upper respiratory tract. Sam's immune system is weak and that is why we have asked that the surgery be moved up if possible. As we get further into winter he tends to get sick easier.

Sam will require 24 hour care for 2 months or more. Sure he'll sleep at night (I hope) but Sam tends to be restless, he used to bending himself in half at night. The brace will keep him from doing that and restrict his movement but Sam can be creative in his sleep as well as when he's awake and we may need to add an extension to the right leg to keep him from trying to turn over on his own or attempt to get out of bed. Sam will need to be fed, bathed and use a bedpan/urinal for the 2 months he is in bed...and that's only his basic needs. I still need to figure out how to keep him entertained, happy, healthy and continue his education. Then let's not forget there are two other children and one of those needs my help with his schooling, my daughter's activities, keeping my husband on schedule and "Oh Yeah" finding time for me???? I think I start to chuckle here!!

Remember how earlier I talked about curling up into a little ball and ignoring the world around me when I have a sinus infection...kinda feeling the same way.

But then I look at Sam.

Today we cuddled up in his hospital bed and watched movies together. I stroked his back and tummy and played with his hair and enjoyed all his smiles and laughter. Sure I had housework to do...I had lessons to prepare...but none of that mattered when Sam asked me to come sit with him. And no, I can't curl up into a little ball and let life pass me by...Sam is counting on me. I need to proceed one day at a time...sometimes one moment at a time and always remember that I'm not in this alone. I have my faith, a wonderful supportive family, I have fantastic friends, and I have a little boy that challenges me to live by his example.

Tomorrow is another day that I get to love Sam...help Sam learn, enjoy his smiles and laughter, accept each and every hug he offers and remember to hug him twice as much. I have a well known routine with my children, I ask them "Have I told you lately??...." and they answer "I love you!" and I tell them "I love you more!" Our journey has built our strength and each day I challenge myself to find the blessings, to not waste time worrying and to enjoy each and every moment given to me. Life is still good...overwhelmingly good!

Getting Moving Again!

As I work through Sam's new diagnosis in my head and in my heart, it brings to the surface so many thoughts and feelings. I want to begin this post with another post from fellow blogger Pia at http://www.thecrackandthelight.com/.

Hello?

New teacher, or therapist, or doctor?

Is that you?

Oh hello…I just wanted to chat with you a second. To caution you. Or warn you.

Please, tread carefully. You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well… you see that heart?

The slightly broken, definitely bruised one?

Yeah, that’s my heart. My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see…a confident parent… or an angry parent…or a happy-go-lucky parent…

You might think that I understand everything… or nothing…… or that I have all the experience in the world because I have done this before… or that I know the rules… or that I don’t know the rules and that is for the best….

You might believe… that I am high maintenance… or overreacting… or maybe neurotic… or disengaged and uninterested… or that I don’t really care… or maybe I care too much…

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn’t matter if it is the first day or a century later. It doesn’t matter where in the “grief cycle” I might be. It doesn’t matter if the wounds are healed, or healing, or fresh and new.

This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don’t speak, in judgment or not, my heart is out there.

Some of “us” parents… the ‘special’ ones… can be a pain in the ass. I know that. WE know that. But we are fighting a fight we never planned to fight, and it doesn’t end. We don’t get to clock out at the end of the day. We don’t get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

When I read Pia's post, it spoke volumes to me. Sam has been given so many labels and in all honesty there are probably a few more we could tag on. His medical history has not been an easy journey. But through it all....I am and remain Sam's mom and I will never guess what God's plan is for Sam. I have tried, but I have been proven wrong each time. My job here on earth with this wonderful little boy is to love him unconditionally, believe in his abilities and NEVER EVER PUT LIMITATIONS ON HIM! When I choose to limit what I do or how I work with Sam, when I do things for him instead of allowing him to do them on his own, when I buy into the labels he was given and allow them to determine the things he will not do, when I don't take the time to figure out how best to show, teach, and explain/work with Sam....I AM DISABLING HIM.

Do you hear what I'm saying...this is my internal battle with myself. So as Sam's doctor, therapist or teacher...now you know where I am coming from. I don't accept a minor hearing loss as okay, I don't accept teaching one form of communication at the expense of another okay, I won't accept the statement, "Sam will probably never be able to....." fill in the blank. Because if I do, if this is my belief...what chance...what hope does Sam have??? We will reap what we sow. God tells us that.

Give our kids a chance to show you...to teach you as they are teaching us. Don't ever give up on them, don't compromise and take the easy way out. What if Einstein, Walt Disney, Helen Keller, Charles Schwab, Nick Vujicic (http://www.attitudeisaltitude.com/) mothers would have given up on them...where would we and they be today? Before you talk to me about limitations, modifications, medication...look in the mirror...picture someone of authority, a professional saying this to you about your own child, a child you love and believe in with all your heart...and then come talk to me.