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.