My apologies.....

For many many things. I have severely neglected our poor poor blog and have received many comments regarding the lack of update. So I am sorry, truly sorry to have kept everyone in the dark for so long.

Several weeks ago we had a follow up appointment with Dr. Lipkin (Developmental Pediatrician) at the Kennedy Krieger Institute. And while he was pleasant enough, he didn't have many pleasant things to say. In a nutshell (take three hours and compress it into a few sentences): Jack has made some progress with his gross motor skills, he has made little progress with his fine motor skills, and absolutely no progress with his language skills. We originally saw Dr. Lipkin in July, at which point he gauged Jack's language skills at nine months. Apparently that is exactly where he remains today. It was a terrible disappointment. I can't even begin to tell you how I didn't want to believe what he was saying, but I knew he was right. The paperwork which documented the appointment had a diagnosis of Speech Apraxia written on it. We discussed it prior to leaving so my brain could start to process what the next steps would need to be, Dr. Lipkin strongly suggested increasing his speech therapy to twice a week. Whew. That's a lot for a little man with so much going on already.

Unfortunately, that is not where this entry ends. Shortly after the appointment I contacted Infants and Toddlers to inform them of the latest diagnosis, and to request a meeting so we could discuss a new strategy for progressing Jackson's speech. A few weeks later (hey we are talking State schedules here...) we met. The Service Coordinator (who is also the Occupational Therapist), Cognitive Therapist, Jack's regular Speech Therapist and a new Speech Therapist were all there to discuss new strategies, or so I thought. After about twenty minutes of talking about the visit to Kennedy Krieger, the new Speech Therapist piped in. She proceeded to tell me that Dr. Lipkin had no business diagnosing Jack with Speech Apraxia, and that only a trained Speech and Language Pathologist could make that diagnosis. She THEN went on to actually READ to me. Yes folks, lets gather 'round for a nice story. She read passages VERBATIM from the Asha.org website. She didn't bother to get Jack's history, didn't bother to ask the other therapists their opinion, and certainly didn't give me a chance to express my concerns. Unbelievable. Your (or at least my) tax dollars at work. Brilliant. She then went on to say that the Neuro-Linguist we consult with is just more or less a glorified Speech and Language Pathologist, who is just pushing her own services. There's one word that came to mind at the time, which I will spare you from publishing on this site, but you get the idea.

Mortified. Livid. Enraged. I, a somewhat well educated parent who takes it upon herself to seek out additional help and resources for my child am being brow beaten by a State employee. I don't think so. Fortunately for her, my proper southern upbringing would not allow me to tell her exactly what I was thinking. No I complained the proper way - several days later to her supervisor.

In the mean while, it seems Jack's Nissen has loosened. Last week he picked up a lovely bug of diarrhea and vomiting, the latter of which he shouldn't be able to do at all. Well, it was quite the surprise to wake up at 3am to the sound of Jack aspirating his own vomit. (Sorry to be so graphic but there really isn't any other way to put it.) And now he is sick. Respiratory infection. Whether or not it is a result of the GI bug remains to be seen, however this does increase the urgency for scheduling the next swallow study. We, all the therapist and most of the docs are certain he is still aspirating.

On a much more pleasant note, he is quite the little man. His personality seems to have made an appearance overnight and he is taking after his father in being the little instigator. Oh well. As long as he is not pulling his sister's hair, I am happy.

Count your blessings...

During the last couple of weeks several thing have happened. Jack has seen the Pulmonary doctor and undergone an EMG. Both of which were fairly uneventful. The results from the EMG were normal, which is great news. He has been sick for three weeks, and is now on his second round of antibiotics and a round of steroids and seems to be doing better. Nebs and meds and repeat. A pretty simple formula for keeping him out of the dreaded hospital. It seems this flu and virus season may be a bit more difficult than the last, but we're hopeful we can handle it with home care.

It is amazing how your perspective can be so different than someone else. We are fortunate, so fortunate, that Jack is a happy, rambunctious boy who loves to pull his sister's hair and screech at the top of his lungs. No words yet, but I'm sure they're coming.

A few weeks ago we learned of an old acquaintance whose three year old daughter was just diagnosed with stage IV cancer. A friend of a friend who we haven't seen or spoken to in years. I've been reading their blog (daily) and keeping up with the roller coaster ride that has suddenly become their life and I am amazed at the strength her parents display. In one particular blog, Amy (the Mom) talks about how she swapped stories with another patient's mother and how sad she felt for her. Wow.

After reading her blogs, I am always tearfully thankful for my children. Through all the struggles it is sometimes difficult to remember that it could always be worse. During our stays at Hotel Hopkins, I recall seeing other really sick children, not that Jack wasn't sick, but in my opinion he was never really that sick, and thinking how lucky we were that he wasn't as sick as they were. Jack has some mechanical / neurological problems which make his life more challenging. But we are fortunate, so very very fortunate that these problems don't threaten his life.

Happy thoughts and prayers for Arden. Perspective is a really powerful thing.

Bruiser

Jason was off today, so he was tasked with dropping off and picking up children from schools. When he arrived at Riderwood to retrieve Ainsley, he was surprised to run into her teacher Mrs. Buchman. Mrs. Buchman was surprised as well to see him but glad for the encounter. Apparently she needed to speak to us about Ainsley's behavior today.

Apparently while waiting in line for the water fountain, Ainsley became impatient with the boy in front of her, who was at the time drinking from the fountain. In her frustration she hauled off and punched him in the back. Yes, folks, that's right, PUNCHED him. Read it again because it is impossible to believe. But yet it is true. Little petite dainty Princess Ainsley punched a boy!

On the walk home, Jason grilled her. I wasn't present for the actual questioning, but I can only imagine there was no less than 100 questions fired at her. It was when I pulled in the driveway that it seemed to start sinking in for her. I got out of the car and she quietly approached me. I could tell by the look in her eyes something was askew, I asked her what was wrong, and she welled up and started bawling. So much so I couldn't understand what the heck she was saying. After getting her to calm down a bit the story finally came out. Jason helped fill in the gaps of her story while she interjected the best defense she could come up with. After all the pieces were put together the whole story includes the following details (the truth of which I cannot vouch for!).

She was thirstier than Graham (the victim) and he was taking too long. It was his fault.

When she was sent to the office after the incident, she was apparently crying so hard that the office staff couldn't figure out why she was there and proceeded to give her a stuffed animal and send her back to her classroom. Ainsley now thinks that going to the office yields toys and prizes!

During art class, Ainsley was rewarded with a "coupon" for her good behavior.

After all the facts came to light, we sent her to her room so that we could discuss an appropriate punishment. What we came up with is the following: She had to call all the grandparents and tell them what happened. She also lost her television privileges for two weeks. And she has to write an apology to Graham and give up her coupon to him on Monday. That last one really hit home and produced even more tears.....

Little Miss Bruiser now. Watch out boys, here she comes.

The Mother of All Updates...

I know I've been really bad about my blogging lately so here's the Mother of all updates.

Dr. Zee the Optho Neurologist saw Jackson a few weeks ago. It seems his Ocular Motor Apraxia is slightly improved (Dr. Zee rated it a 15% improvement). And with more time it should improve even more, although it is uncertain if it will ever go away entirely.

Dr. Collins, the Opthamologist, said Jackson is farsighted, although that is fairly common in children and is still within the normal range for his age group. So no glasses, yet. She'll see him back in six months.

Dr. Cohn, the Genetic Neurologist, has ordered more testing for Jack. He is to have an xray of his spine to check for Scoliosis. We will be drawing blood to repeat his acylcarnitine profile, since his liver enzymes were high when last tested. And last, but not least, Jack will undergo an EMG (Electromyography) to test muscle and nerve function. It's not a pleasant procedure, it involves needles and electric current and NO anesthesia. But it will yield some valuable information about Jack's nerve conduction and muscle function. Hopefully it will be worth the unpleasantness.

All of us, with the exception of Jason, have had our Flu vaccines already. Armed and prepared for the winter months which will, with any luck, turn out to be very uneventful.

The Sub Sub Specialist

Today we had a follow up appointment with a sub sub specialist, Dr. Lefton-Grief, Jackson's Pulmonary Swallow Specialist. While we expected a fairly warm and fuzzy visit, it wasn't quite as joyful as we had hoped. Dr. Lefton-Grief suspects that Jackson is still having issues with liquids, more specifically she thinks he is still aspirating liquids. After spending about an hour with the good doctor, it seems Jackson will be keeping his g-tube through the upcoming winter season. That was a little disappointing, she was however pleased with his progress and encouraged us to keep trying. We will be taking him in for another modified barium swallow study once we can get him to drink something other than water but yet not a dairy product. (Anyone have any ideas?)

Friday, Jackson is scheduled to see another sub sub specialist, Dr. Zee, an Optho Neurologist. I would venture to guess that none of you had ever heard of an Optho Neurologist before. I know I hadn't.

I am officially a yuppie in suburbia....

I went out with the girls tonight, for the first time in a very very very long time. I came home just in time to say good night to Jason and have some quiet alone time to myself. As I was flipping through the channels I came across the HD version of "She's Having a Baby", specifically the choreographed lawnmower scene. Upon viewing it for a few moments it came upon me that this is my life. So much of this movie is real it completely freaked me out. And had I not recently consumed three Jager Bombs, I would have been considerably more freaked out.
But looking at it for what it is I realized that everyone has there own little dramas. Everyday, there is something somewhere that affects someone. Big or small , today or tomorrow it happens. The reality of it is how you deal with it. Watching Kevin Bacon scurry around panicked with the idea of the impending doom of child rearing that lurks in the darkest corners of his life, it occurred to me that everyone deals with chaos and drama differently.
But what is even odder, is that this is not the first time I've seen this movie. In fact it is like the 50th time I've seen it. But through the years my perspective has changed, and I suppose it will continue to change. Shaped by the events and elements that make up your life, slowly but surely we all figure it out. And I am suddenly amazed and awed at the number of things that I have managed to figure out, and even more shocked by the number of things I have yet to figure out.....

It's been a big week....

For once let me blog about Ainsley.  Goodness knows she doesn't get quite the print that Jackson does, but it has been a big week (or two) for her for which she deserves the attention.

Two weeks ago (or so) she mastered the art of riding her bike without the training wheels.  Last week she learned (and yet again mastered) tying her shoes.  This week it was starting Kindergarten and then yesterday she lost her first tooth.  All momentous occasions, with much rejoicing and accolades following them.  I can't believe how much she has grown up in the last month.  I jokingly said to her that she is no longer allowed to eat vegetables or take her vitamins.  On some level I'd like nothing more than to lock her up in the tower and throw away the key.  Anyone know a good convent I can ship her off to?