Hope for a Shriners Hospital Miracle

Thought I would give Mr. David some love today. I really need to post here more simply because there is so much to say. So much in fact that sometimes it is overwhelming. David so far has had a good school year. He started the year having dental surgery but it only kept him down for a day. Other than a day or two and some doctors appointments, David has been able to stay in school. His daily attendance helps him to progress and gives him stability and routine. He likes school even though he tends to rebel from time to time.

David just had his baclofen pump checked a week ago. His bp is a pump inserted into his stomach and wires or tubes that attach to his spine. Every six months baclofen (a muscle relaxant) is injected into the pump and the pump in turn distributes the med to his lower extremities on a schedule at the exact time and the exact amount every day. This pump doesn't work for everyone....but for David, it has helped to loosen his leg muscles immensely. Sadly this all would work for David much more efficiently if he didn't have a few strikes against him.

His first strike is that finding and keeping a good physical therapist (pt), one that has some experience, doesn't just want to put him in a stander and call it good and one who has the vision to see Davids potential and not just the here and now are hard to come by. Second....because of his seizures he is on a three time per day cocktail of meds and some of them come with less than fun side effects. The newest med they have put him on is Depacoat. By new I mean in the last 6-10 months. The Depacoat has definitely helped to put his seizures in check but the major side effect is aggression. Most days the aggression is light to moderate with some pinching and hair pulling, but some days we have full fledged tantrums with biting and crying. The school paras have learned David's behaviors and handle him with relative ease as we do at home, but when you combine the aggression with trying to stretch him (something he hates on his best days) then it makes for some difficult pt. And because of lack luster past Pt's who didn't "make" him walk with his walker and feel the need for stretching....David's mobility is nowhere close to where it should be. The fact that David is now weighing in the 70's does not make transitioning him and moving him easy on anyone.

As I watched David exceed in every other avenue but mobility I was starting to feel a bit of desperation feeling that he was not being helped in the manner he needs to be. As always seems to happen....God gives us what we need when we need it most. He put a new friend in my life.....whose father was a Shriner. Now of course I have heard of Shriners before. I mean I have been to parades....duh! But never had I really known what Shriners do. Jill gave me a run down and told me that she had spoken with her father and they would like to sponsor David to go to Shriners Hospital in St. Louis. I was excited to the point of being sick. So we got the paperwork, got it filled out and we were underway. The road was not particularly quick as I started the proceedings last spring.....and David's seizures almost made him ineligible to go to St. Louis, which would have meant starting from scratch to seek acceptance at another Shriners hospital, but low and behold.....we got a date.

I was informed that in late January, David will be seen at Shriners. What does this mean? This means David will be seen at the hospital by some of the finest orthopedic doctors in the country and his case will be reviewed by a team of doctors and therapists to see what direction needs to be taken to give him the best chance to walk. They will decide if assistive equipment is needed, if he needs surgery, braces or all the above. The best part is all of this is taken care of financially through the Shriners. This includes our travel expenses and lodging if needed. Thankfully we won't be needing lodging as we have family there we will be staying with. It is a blessing I was not expecting this time last year. Even if this means we will be trekking to St. Louis on a regular basis for awhile....every mile will be worth it if it means David can be mobily self sufficient. That and my family will no longer be able to say...we never visit.

David's world is one of walkers and wheelchairs and meds which make him mad. Daily he fights to communicate in a place where words are difficult for him and yet he knows what he wants and means. Despite all of this....David is basically a very happy kid who rolls with the punches and takes things as they come....both the good and the bad. I am hoping that this trip to Shriners may end up being a whole lot of prayers answered at once and a new path to a more self-sufficient life for David.

One of my greatest dreams would be to see David run and play with other kids. While I know the likelihood of that dream coming true is slim to none, I would settle for David being able to walk and I know if that day ever comes....there won't be enough Kleenex made for the tears of joy I will shed. For now though...I ask for prayers and good thoughts that come January....my little guy....The Incredible Mr. David....gets a great big Shriners Hospital miracle.

Sammy

The first few years of my school life were not very pleasant, but for some reason.....kindergarten sticks out as an okay year. I remember a huge room that was sectioned off. We had a rest area, a painting area, a reading area and two fully stocked kids kitchen area's. It was the kitchen area's I loved the most. Don't even ask me why. When I started kindergarten....I was four which was allowed back then. I was much too young to start and much too emotionally unprepared for school. My home life was a mess which spilled over into school and yet I loved kindergarten and held all other grades accountable when they didn't measure up to my kindergarten experience. Even in high school, I longed for kindergarten. I am thinking it was the naps! 

Along with the vivid memory of the room I shared with 15 or 20 other faceless, nameless students, one other student has stuck in my memory all these years. There was a little boy named Sammy. Sammy walked funny and carried himself with almost an Igor type gait always dragging one foot with every step. His arms seemed a bit disconnected and would almost flail about. I don't remember Sammy ever really talking but more grunting and sometimes yelling out and yet I do remember seeming to always know what he wanted. 

In 1960's America....disability was almost a dirty word....especially when the disability had to do with brain damage or injury. Of course there were still remnants of those walking around with metal braces and arm canes from the now non-existent polio epidemics, but disabilities where brain function wasn't what society deemed normal or where limbs were disfigured and/or non-functional were looked upon as one step up from the criminally insane. Many of the disabled were shunned, humiliated and ridiculed for their inability to be normal. It was a very unenlightened time and kids following their parents lead looked on Sammy as a misfit in a normal world. He was laughed at and made fun of I think mostly.....because the other kids were uncomfortable and didn't know how to communicate with him. I didn't either but I too had my own feelings of non-fitting in so I was not about to make him feel as bad as I often did.

It just so happened that Sammy loved those play kitchens as much as I did and so every time we had play time.....we both headed for them. Being that neither of us was amongst the socially popular of the kindergarten set......we always ended up sharing a kitchen all by ourselves. Somewhere along the line I realized that Sammy had an understanding of how to play kitchen and he would try hard to set the table or pull things from the cabinets, but his inability to control his upper body often resulted in make believe tea party spills or make believe supper being knocked everywhere. You could see the frustration in Sammy's face and he would groan or yell out because of his lack of control. Eventually Sammy and I learned to play kitchen quite well and when the little accidents happened.....we just cleaned up and moved on. I also learned that Sammy in his own way was participating in everything. When he liked something....he would yell out and his face was all smiles. Sadly though his appreciation was usually taken as disruption and he was told to "hush" or "shut up." This further made the other kids uncomfortable and caused more of a divide between Sammy and the class. When Sammy was sad, frustrated or upset he would let out groans and hang his head. This happened when he wanted to play ball with the other kids and they would call him names and chase him away or when he was not understood which was all the time. I remember thinking I could understand Sammy (at least most of the time) so why was everyone else having such a hard time?

Sammy and I were never really friends....we simply accepted each other as the square pegs trying to fit into round holes that we were....and made the best of it. After kindergarten....I am not sure what happened to Sammy. He may have still been in my class or moved to another class or......moved out of the school entirely. I simply don't remember because I was going through three of the absolute worst school years of my life....and my focus was pretty much on ME! Since though....I have thought of Sammy often and when I was older I remember talking to my mom about him. Apparently Sammy was the son of doctor. Mom being a nurse at the time knew all that went on amongst the doctors and nurses of our small city. Sammy was the youngest in his family, and according to Mom....the doctor and his family had a difficult time admitting that Sammy had such severe issues. It was the first time I had ever heard the words Cerebral Palsy which is what Sammy had been diagnosed with. Rather than put Sammy in a "home"  as often happened to kids like Sammy, they tried to ignore his disabilities and mainstream him....something my mother had very strong opinions about at the time.

Looking back, I wonder if my mother knew the whole story. Was her take on it something she knew for fact, was it hospital grapevine gossip or was it just what she suspected? At any rate....I wonder what happened to Sammy? Being a parent with a special needs child after having others who were not....I totally sympathize with Sammy's parents. On top of that....having a special needs child long before there was Starkey, Rainbows and other agencies and programs that worked with special needs kids....I can't even begin to imagine what Sammy's parents went through. My only hope is that with Sammy's dad being a doctor....hopefully he had the ability and the contacts to help Sammy to better his life and get the therapies and assistance he needed.

So why the story of Sammy on David's blog? Because today I had to go to a meeting at Rainbows in Wichita. I had never been there before and what I saw was totally impressive. Here is a place that houses physical therapists, occupational therapists, speech therapists and class rooms for kids with special needs. While David has had services through Rainbows before....never had I actually seen the building and for some reason while I was there....I thought of Sammy. I couldn't help but wonder if in the 1960's when Sammy was a little boy if he had had the benefit of PT, OT and speech if his leg wouldn't have been straight and he could have walked without dragging his little leg behind him. Maybe his arms could have been trained to be steady so that we could have had a tea party without spills....... and instead of grunting or yelling.....maybe Sammy could have showed his joy or his frustration through sign language or even words. Wow...how amazing kindergarten might have been for that little guy.

Jump ahead to the new millennium and now my youngest also has CP. In some ways.....David's disability is greater than Sammy's and in some ways Sammy's was greater than David's but David has the access to many wonderful OT, PT and speech therapists who work diligently to help him not only obtain goals but exceed them. He has teachers and para's who ensure that his school experience is one of rewards and not ridicule and he has access to assistive equipment and technology to ensure that he goes as far in life as possible.

It makes me sad thinking about Sammy from a parents perspective and how difficult life must have been for him in that kindergarten class all those years ago. I am a firm believer though that God gives us the people we need in life and obviously I needed Sammy to prepare me for David. It does make one wonder though.....what Sammy could ever possibly have needed me for? Whatever the case though....thank you Sammy.....wherever you are.

Another Seizure Day Has Passed!

Well...yesterday was not exactly fun for me. David neither for that matter. In the last week....I have noticed David has been grinding his teeth a great deal. I have learned over the years that this tends to be an indicator that seizures are on the horizon. But hope always springs eternal and I always pray that he is just wearing his teeth to nubs because of his CP and NOT because of seizures. Once again my hopes were dashed!

In all fairness....I have gotten so much better about David's seizures and I don't tend to panic like I used to. (Used to as in last summer!) But yesterday did kind of  make my pulse race a little faster. The teeth grinding started about two weeks ago. Then last week....we had a couple of nights were we had bedtime mini seizures. They were short lived and he seemed to be aware the whole 20 or 30 seconds they lasted. Then Monday night he had a little more intense mini seizure which lasted maybe 45 seconds...but again....he was with it the whole way through. I just continued to watch wondering if these were in the process of building to something much bigger and trying to figure out if anything was different in his life right now. He was under no undo stress (that I know of), no fever, no new meds and puberty I can do nothing about. All the things I can control.....were controlled. So I wasn't sure what was going on.

Yesterday we got up...got ready....and David wanted to stay in bed after he got dressed and watch....what else....Spongebob. So I was trying to get myself ready and I decided him watching Spongebob worked for both of us. I had my back to him as I was picking something up and suddenly I heard the fierce grinding of his teeth. I knew before I turned around that he was having a seizure. I walked over to him and he began making his seizure face (that is what I call it) pursing his lips and making an "ooooo" noise. This time though....he wasn't aware and his eyes were darting. I stood there saying "David....can you hear me?" He was not responding and between trying to get him to respond to my questions and wondering if this was going to turn into something much bigger...I began watching the clock. At 2 minutes I was prepared to give him Diastat. Fifteen seconds past, then twenty, twenty-five, thirty and then finally at forty-five after saying "David....can you hear me?" he signed YES to me. He then started coming out of it.

While this was not a long seizure it appeared to be a deeper seizure for lack of a better word. I don't believe he was aware during this seizure and when he came out of it....you could tell he was scared. I held him for a few minutes and then he seemed to be back to normal. My instinct was to keep him home and hold him all day. The calmer side of me though....realized this was just a speed bump in our daily road and that both of us needed to continue forward. So I sent him to school, but not without first calling his teacher and letting her know about the mornings activities.

I called the neurologist as soon as his office opened and told the nurse what had transpired. She said she would talk to the dr. and then call me back. Before she could.....the school called saying that he had had another one lasting about 30 seconds. Again....my pulse was hitting about 150 bpm, but I calmly told them to give him 1/2 a diastat and to let me know if anything else occurred. I then called the dr. back with the new info. When the dr. called me back....they just said it was time for a med change (which is what I figured....darn that puberty)!

David had no more seizures at school yesterday and by the afternoon he was back to his old self. Of course...he couldn't let the day end without a grand finale.....so just as he was going to sleep.....he had one more mini....but it wasn't really a pulse racer.

He is now on a gradual increase in meds and this morning he woke up full of fire and ready to burn. The minute he was dressed he was on the floor and playing with his toys. Oh and yes....there was Spongebob too. His eyes were bright and as I put him on the bus....the whole neighborhood new that David was off to school. It looks as if another seizure episode has come and is in the process of leaving us. While I didn't lose my cool and neither of us missed a day of productivity.....I still will be glad when the day comes that seizures are no longer a part of David's life. And I have every faith that....that day will indeed come!

The Haircut

Yesterday David got a much needed haircut. He has some pretty wild cowlicks and when his hair gets any length....we start having some crazy bad hair days. For some reason....cutting his hair is one of my least favorite things to do. I am not sure why as he is really great when it comes to haircuts. He actually sits fairly still and there are no dramatic tantrums or sudden movements which could cause  the loss of an ear, eye or a deep hair gouge resulting in the need for a shaved head. Still....I have never liked doing it....and everyone in my family is aware of the fact.

While I was out getting irregular moles removed from my body yesterday...Zachary decided to try his hand at giving David his first hair cut. I was a little nervous at the sound of this, but he sent me a picture of the finished product and it looked pretty cute. When I got home there were a few hairs longer than the others but for the most part.....it looked really good. David as always really liked it. He loves a new haircut....especially when it is buzzed short. He spent the better part of yesterday evening running his hand across his head and when he saw himself in the mirror he kept pointing saying..."Oooooo!" which is David speak for "I like it!"

As you can see....he looks quite handsome with his new do and he is not afraid to pose for pictures.

It always amazes me when he gets a hair cut how much older he looks and also...how much he looks like his daddy. Of all the kids in fact....he looks most like Tim and every time I look at him with his new cut I see a part of his daddy staring back at me. There is definitely no denying parentage here.

All seems to be going fairly well with David right now....if I could just put his braces on the right feet of morning. My inability to see well or to function well early of a morning has sent my poor little guy out the door twice with his braces on the wrong feet...resulting in red marks and even blisters. I guess there goes my Mother of the Year award. That and his teachers I am sure think that I am the one with learning disabilities...not him. I have got to remember to wear my glasses when I dress him in the mornings!!!

He seems to be doing okay where seizures are concerned, but I am always on my guard. Recently he has been a little aggressive at school. This is really not David. We are either dealing with silent seizures again, hormone changes, or shunt issues. The latter is my biggest concern as the last shunt malfunction he had was not discovered until his shunt had been clogging and unclogging for a period of time. It really did a number on his health and I am sure it made him feel bad all the time. I don't want him to have to go through that again if I can avoid it. For now though....I just watch him and we enjoy everyday as it comes. Me and my Mr. David!

CP Clinic

One of the many definitions of Cerebral Palsy is: a loss or deficiency of motor control with involuntary spasms caused by permanent brain damage present at birth. 

It is something David lives with daily and yet we really don't pay much attention to it as braces, walkers and wheelchairs have become our norm. As I have said in the past....David and disability are rarely used in the same sentence around our house....and yet the reality is.....David has cerebral palsy. By every definition of the word...David has a disability. 

Today David had CP (Cerebral Palsy) Clinic. This is a little appt. we go to every 6 months in which David gets a pretty thorough check up. It is kind of like his 3000 mile check where they check the oil, check under the hood, and rotate the tires. We have to get to the clinic at 7:30 a.m. to check in (us and a ton of other people). Then you are placed in a room and you wait to be visited by an orthopedist, a neurologist, a social worker, a nurse practitioner,  an occupational therapist (OT), a physical therapist (PT), a nutritionist, a dental hygienist, an orthotist, and a wheel chair specialist from CPR (Cerebral Palsy Research). Each visit we see the same professionals and each visit takes most of the morning (sometimes longer if a dr. wants blood work or x-rays or a longer consultation). Today we got out of there at about 11:30 a.m. which was awesome as David was just about out of good humor and his mother was nearly drained of patience. 

We found out from the orthopedist and PT that David's legs are doing well. They are pleased with his progress in the last 6 months and suggested we might add hippo therapy (horseback riding therapy) and aqua therapy (swim therapy) come summer. We also discussed getting David a stander for when he watches tv so that he is not sitting in a bad position (he likes to sit on his knees). Unfortunately a stander is way out of our budget and insurance will not cover it, so we moved on. She ended up by saying that  David needs to walk....walk....walk. The neurologist (our own sweet Dr. Shah) was as usual very happy to see David and said that since he (Dr. Shah) and I usually have to talk weekly that all was good with David and we can just stay where we are at on both meds and treatment. The OT talked to us about a tub chair for David to transition in and out of the tub easily (as now he either climbs over the side or gets lifted in). I told the nutritionist he eats like a pig; the hygienist checked his teeth ....said they looked great and gave us a new toothbrush; and finally..... David from CPR said my David will be due for a new wheel chair next year. For now....we just have to do maintenance and hope it lasts another year. So those were the high points of the visit. 

By the time we left David was starving so chicken nuggets and fries it was....(for him...not me....I got a salad!) As we were driving home I was thinking. I simply do not think about David's issues very often....even though they exist and to someone outside the family may even seem difficult to deal with. David is very independent even though he has muscle issues and David ALWAYS gets his point across to us....even though his speech is limited. But the stark reality is.....David is disabled and likely always will have some form of disability. However....I find myself feeling so blessed and so grateful after walking out of CP Clinic. Out of all of those kids that come to each visit with varying forms of CP....everything from a slight limp to extreme disability being wheelchair bound, feeding tubes, and in some cases oxygen and very severe mental delays.....David is lucky. For the most part....David's health is good (if there were no seizure issues it would be great). He feeds himself, undresses himself, gets himself around at home and is able to transition himself when not at home. He takes no meds other than seizure meds, his heart, lungs, kidneys and all other organs are fine and the best part is.....every day he progresses. Every day he learns something new; every day he tries to say more words; and every day he moves closer to one day being a fairly independent young man. David truly amazes me.

So yes....today although CP clinic left me feeling worn out (David dozed between visitors)....I am feeling very blessed. I am blessed that there are clinics like CP Clinic that are available to help kids like David. I am blessed that there are drs. and other professionals (like Dr. Shah and the OT's and PT's ) who are so willing to  give of their time so kids like David have the best possible chance at a great and productive life. Most of all though.....I am so blessed to have such a wonderful little guy like David in my life. So for now....blessed is the best word I can think of for my life with the Incredible Mr. David!

Just Seizures

Well....last weekend was another ER trip. What started out looking like seizures changed course on me yet again and had me questioning just what I know about seizures and my son's health in general. When you are dealing with two different issues.....a shunt AND seizures in some cases the distinguishing factors can't be distinguished....it gets a little tricky. For example....the onset of a shunt malfunction causes pressure on the brain. Since David is non-verbal....I have to go by his facial expressions and behaviors....and apparently when something is going on in his head, his expressions are the same regardless of shunt or seizure. A shunt malfunction can also cause a seizure. Seizures can cause some of the same symptoms of a shunt malfunction. He will get very pale, sometimes feverish (depending on the type of seizure) and his vital signs drop. Since you don't want to mistake one for the other as a shunt malfunction is life threatening, I have learned to live by the motto....When in doubt....get him checked out. It does however make me feel some better when I take him in to the ER and the drs. themselves can't make a judgment call between the two without doing blood work and CT's.

Luckily....this weekend we were just dealing with seizures again and were sent on our merry little way. I said that to a friend....that it was just seizures and that we could handle that at home and she laughed at me. Just seizures? She asked if I remembered David's first seizure and his second one where I was almost too scared to take him home from the hospital and even last summer when I thought I would go crazy with all the mini seizures he had? And now I am using the word just with the word seizure and acting like it is a relief. It did sound funny....even to me.

The truth is, it is amazing what we learn to adapt to and live with and even eventually deem normal to our daily lives. I guess the fact that David can and likely will have seizures has become our norm. Probably too knowing that 90% of his seizures are mini-seizures lasting only 30 seconds and that he then goes on with whatever he was doing no worse for the wear helps me to usually not get overly alarmed any more. That and all the straight forward talks Dr. Shah has given to me. Dr. Shah is a little man (maybe 5'4") who speaks with what I believe is a Pakistani accent. He is very serious (unless around David.....but that is another story for another time) and very soft spoken and yet there are times that man has made me feel about an inch high. We have butted heads on several occasions and a couple of times he has put me in my place in no uncertain terms. Over the years though....I have learned that he truly cares about David and he ALWAYS has David's best interest at heart. Being David's mother though and having a vested interest in his survival.....if I don't agree with something or question it where David's health is concerned.....I don't hesitate to speak my mind. This does not make me a favorite amongst drs. Luckily....David's personality seems to make up for my big mouth.

So back to this friend who thinks my just seizures remark is hysterical. In the same conversation....she asked me if I felt I had learned a lot about seizures in the last 2 plus years. I had to stop and think. Hmmmm.....going from not even thinking about seizures and having a mental visual of someone writhing on the floor, their eyes going back in their head and their tongue swelling....to actually watching my child have seizures, giving him his meds and going on with the day.....why yes.....I do feel like I have learned a little. What have I learned? Glad you asked.

I have learned:
There is more than one kind of seizure and in my home we have dealt with febrile (brought on by a spiking temp), mini, staring, blinking and silent.

Seizures can happen all over your brain or just in various areas. Only an EEG can tell from where the seizures originate.

Different meds are required for the different kinds of seizures and for the different area's of seizures.

Often times not just one med will do the trick. In David's case he is on three different meds most given three times a day.

Seizures can be undetectable or last anywhere from seconds to hours.

Most seizures do not do damage unless they go an hour or longer.

Mini seizures can usually be halted by diazepam (valium)

Seizures lasting over 2 min. need a good dose of diastat (adavan) to stop them.

Having a seizure lasting more than 5 min. is like that person running a marathon. Their body is just exhausted and their muscles are limp. Often times they will sleep straight through the following 24 hours.

Because a pro longed seizure plays so harshly with the body....it also does a job on the emotions. There is usually a good 48 hour period where the individual is just an emotional mess. They experience everything from anger, agitation, sadness, laughter, and even a bit of aggression.

A febrile seizure can trigger other kinds and types of seizures.

Anyone can get seizures but kids with cerebral palsy are often very susceptible to them.

For someone with seizures, seizures can be triggered by exhaustion, bright sunlight, light reflection off water or snow/ice, certain video games, strobe lights, flashing/blinking lights, hormones, a cold or flu, missing a med dose or taking anti-biotics without adjusting seizure meds.

Sometimes since seizures are a type of misfiring in the brain....an individual can come out of seizure being able to do things they couldn't do before. In David's case....he started saying Mama after one seizure and was able to put on gloves after another.

There is usually little if any memory of the seizure and as I said above....usually no permanent damage done.

Often times kids grow out of seizure activity when they grow out of the hormonal teenage years.

While scary (especially at first) seizures are livable. Of course precautions such as meds should be in place, but just like with anything else....a new kind of normal can be established.

So have I learned a lot since David's first seizure in 2008? Much more than I ever wanted to or thought I would. Is there more to learn? I know there is literally tons I don't know about seizures and the way my life goes.....I am sure I am going to get plenty of hands on....on the job training. But for now, there was no shunt malfunction...and before we left the ER on Saturday.....David was back to pretty much his old self. So yeah....for now, I take a big sigh of relief  knowing that the med change is working and that life will go on because we are simply dealing with.....just seizures. 

The Story

Wow!!!! David is one of my favorite subjects to talk about....and yet one of the most difficult for me to be completely honest about. Thus...the distance between blogs.

I think part of the reason it is so hard for me to discuss David (his health/disability in particular) is because with David...you forget that disability exists. Okay.....we at home do. To us....he is not a special needs child with issues. He is just simply David. He gets around and is extremely independent. He communicates. He plays. He laughs. He watches tv. He gets mad. He may not be "normal" by the outside world standards but by David standards...he is as normal as it gets.

The reality of Davids situation is that he was born at 27 weeks (about 3 months premature.) He was born with a grade 4 brain bleed in both ventricles....which means both ventricles of his brain were full of blood and bleeding. He was immediately put on a ventilator (where he would remain for 3 months) and he began a fight for his life. The original prognosis at the time was that he could have cerebral palsy and he could be developmentally delayed or he could be just fine. No one would know for sure until he was older and his development skills started showing up.  A baby's brain is a funny thing in the fact that even though damaged (i.e. brain bleed) it can in many instances heal itself. Basically the good part of the brain can supersede the bad or damaged part and heal itself. We had hopes.

David was very tiny when born. He weighed 2.2 lbs and was only 12 inches long. His skin was still almost transparent and to me he looked like a baby bird without its wings. He was so tiny and fragile and I could only touch him as he could not be held or picked up because of his vent tubing. Because he was so tiny and his skin so thin.....finding working veins to keep blood (which he needed a lot of) and meds going into his little body were almost impossible to find, so they kept a line going through what was left of his umbilical cord. We later learned that they like to take those lines out as soon as possible, but in Davids case that simply wasn't possible......so his line stayed in about two weeks. The danger in keeping the line is infection. The worst happened and he developed a yeast infection of the blood called Candida. Immediately his whole body became septic and turned a horrible shade of gray. They had pulled the umbilical line as soon as they knew what was going on, but now he needed anti-biotics (one called ampitericin) and they could not find a vein to get the meds going. He was dying and we were watching. It was the most horrific feeling  I had ever had. Eventually....God sent us an angel just in the nick of time. She was disguised as a very young neo-natal nurse who was not about to allow David to die on her watch. Thanks to her......his life was saved.....for the moment.

As David remained in the NICU...we were given quite an education on preemies, preemie illnesses, brain bleeds, blood infections, and the strength of our new born. Once the Ampitericin had done its job and David's body was infection free, we took a moment to breath. Our breathe was cut short when we learned that Candida balls up in the body in a clot like form and hides behind or around vital organs. It can then break apart and go to the lungs or the brain causing seizures, strokes and ultimately death. David being the text book child that he was had the clot next to his heart where each time his heart beat the clot dangled precariously. If it loosened it would block the artery and stop blood flow....thus killing him. He also had a clot in his stomach area basically holding onto nothing. The one in his stomach broke free. In one evening we watched as our little guy had numerous seizures followed by several strokes. The CT following all of this showed that his brain had what they called a total brain assault. His brain literally looked like swiss cheese and the prognosis was that David would likely never be more than the very unPC term......a vegetable. Luckily....God had other plans.

Once Davids actual due date arrived.....his health took a dramatic change for the better. He got off the vent, started eating and we learned that he was hydrocephalic. Hydrocephalus is where the fluid from the brain does not drain causing brain swelling and if not taken care of....death. Immediately David was taken into surgery where a shunt (a device which keeps the fluid draining from his brain into his stomach) was placed behind his left ear. When all was said and done.....David began progressing and was able to leave the hospital at almost 5 months old weighing 4 lbs with no tubes, oxygen or meds. The future was still unknown to us....but his present was looking very bright.

As time went on....David did prove to have learning disabilities, speech issues (he speaks very little), cerebral palsy and of course his hydrocephalus. Other than getting the normal colds, allergies, etc though....Davids health was good and every day he was growing by leaps and bounds. It wasn't until he was 8 years old that David had his first seizure since his days in the NICU. I awoke one morning to find him unresponsive on his bedroom floor. His eyes were darting, his skin was clammy and he did not respond to anything. I thought he was dying. After having the EMS come and take him to the hospital....I learned he was post seizure. He apparently had experienced a febrile seizure(a seizure brought on by a temperature suddenly spiking above 102 usually). He had been getting over an ear infection and had seemed to be fine the night before, but apparently early that morning his temp had spiked. For the next 24 hours David never opened an eye. I was terrified. This was new territory that I was not prepared for. Seizures were not even on my radar. After a 3 day hospital stay, being put on anti-seizure meds and several lengthy educational pep talks from the neurologist.....we went home.

Soon all was right in our home again and apparently the meds controlled the seizures well, because again....seizures became a thing we didn't think about. David progressed and continued to be David and all of his drs. were more than pleased with all the mile stones David strived to hit and complete.

When David was 9 years old....we had our one and only experience(so far) with a shunt malfunction. We later learned that his shunt had been clogging and unclogging for a period of time, but the day it clogged completely was scary. He woke up pale, clammy and extremely listless. He could barely hold his head up and only whimpers left his lips. I took him to the dr. where they immediately suspected his shunt and they sent us on to the ER. Once in the ER we found his blood pressure and his pulse to both be extremely low. My normally active child just laid looking at me with sick, sorrowful eyes. Finally after several tests and what seemed like hours of waiting.....it was confirmed that his shunt was not working properly. He was taken into surgery and the shunt was removed and replaced. We later learned his shunt had been completely clogged from top to bottom. Within minutes of coming out of recovery.....he was a different kid. He was making noises and trying to move and get around. I cried with relief. He went home the next day.

Again our world went back to normal until summer of that year when David had another febrile seizure. This one I got to witness from start to finish. Again he was coming off an ear infection which he had been on anti-biotics for. He was playing and suddenly he began to stare off an then his eyes began to dart. Finally his hand began to jerk. I knew immediately what I was witnessing. I gave David his emergency meds with no results.....so we called EMS and after about 20 min. they were able to stop the seizure with adivan. Once in the hospital David remained in the ICU for 24 hours in which he never opened an eye. Once moved to the regular peds unit he stayed another 24 hours and then was released. Another scare that we lived through and threw our world out of kilter.

We have not yet experienced another febrile seizure but for the last year and a half we have been dealing with mini seizures. They are little seizures that last maybe 30 seconds to 1 min. When they first started we didn't recognize them as seizures until I mentioned them to the neurologist. Even he didn't think they were seizures but decided to do an EEG where they found that David was having significant seizure activity. After more meds, and his mini seizures developing into cluster seizures, a summer spent in the ER and hospital and some major seizure education on my part.....we are finally at a point where we can co-exist with the seizures. No longer do I go into full panic mode or stop life mid sentence when he has one of the minis and since we continually tweak his meds according to weight and age.....he seems to be doing very well.

This year David started 3rd grade at a new school. I was nothing but a big ball of anxiety about this move up to third grade and terribly afraid that the care and attention he received in previous years might not follow him to the grade school. However.....after one week....my fears were gone. Not only does he get the same wonderful experience he got in his early school years, but he also seems to be thriving in his new surroundings. His health has remained very good this year and his development continues to evolve and grow with each day.

So as you see....David really is incredible, with all that he has survived in his little life. He has suffered more, lived more, laughed more and enjoyed life more in his 10 years than some do in 80 years. I see David as David....not someone who can't do things because of a disability, but someone who CAN do things in spite of a disability. In fact....most of the time in our home....disability and David are not used in the same sentence. We just don't see him as anything but perfectly....David. There are those times though....when he has a seizure episode or a shunt malfunction or he struggles to have us understand what he is trying to tell us that I briefly see him as slightly more fragile and a child that maybe needs a little more time, effort and care. But as I said...those times are but momentary....and then we get back to the life we have created for us.

I guess...even though I usually have plenty to say about most everything....when I start actually talking about my David, I have to come to terms with reality. The reality is that David is one of God's special children who are truly perfect in His eyes and who is here to teach the rest of us what it really means to live. There are no definites and nothing with David can be taken for granted, but I wouldn't change the last 10 years for anything. Not one ambulance ride, ER trip, hospital stay or surgery. Not one laugh, one word, or one episode of Spongebob......because it is all part of life....with the Incredible Mr. David.