I was that the Dr. we were going to see at the CP Clinic "lacked bedside manner" MAN, was that an understatement. First -- the facts. They took x-rays of Jack's hips and legs which looked normal. He examined Jack and diagnosed him with Spastic Hemiplegia Cerebral Palsy. He said the spasticity is mainly in his arm but Jack has very tight hamstrings on the same side as well. Add that to seizure activity and a right visual field cut and you have a 'classic' case of hemi CP. I had suspected this was the case, even though his neuro felt it was mono (one limb).

Oooookaaay, now the bedside manner thing. He was rude and condescending -- and did not speak to us AT ALL. He would ask us a question and then give his opinion into a little taperecorder. He spoke to the wall into his recorder -- not once addressing us directly -- unless it was to smirk as if to say you're an idiot. I had a list of questions -- he let me get through about 2 of them and basically ended the appointment.

He wants to see us back in 6 months.

I am upset because to me, this clinic was 'IT' as far as getting answers and information. I do have many other great resources (Jack's therapists, other docs, etc.) but this was sort of the final place to put all of the pieces together. I may try to see if we have a case manager -- or if we are going to be involved in the full program as Jack gets older.

Jack has always been social -- no news there, right? Do you believe he's getting even MORE social? Our little man LOVES to go out to eat. I think restaurants are his favorite thing in the world right now, (right next to swimming and swinging of course). He's such a good baby when we're out even though he LOVES commanding attention at the dinner table by 'talking' over everyone else...almost to say "HEY -- DONTCHA WANNA HEAR WHAT I HAVE TO SAY??" too cute! We always have such a good time! Jack's been eating mostly table food these days -- I am amazed at how he loves to eat. He loves to feed himself and make a mess for mommy and daddy! The dog has learned to sit by Jack because eventually there'll be something yummy heading to the floor! Jack now says DA-DA -- but we're not exactly sure if he's talking directly to Jason, because everything is DA-DA...Jack where's the puppy? DA-DA-DA, Jack's where's mommy? DA-DA, Jack, where's daddy? DA-DA!! Ha ha ha...he's such a great little guy! I have updated the Favorites part of the webpage -- check out all of Jack's new favorites!

Bright and early tomorrow morning Jack has an appointment at the CP Clinic at the medical center. We see an orthopaedic surgeon for an evaluation and will probably speak to a case manager to discuss Jack's involvement in the program. Wish us luck -- I will update when we get home. Hope everyone's having a great week so far!

We had Jack’s neurology appointment this morning…

The neurologist was a very nice and gentle man – he was very willing to answer all of our questions…Jack liked him instantly and decided he was going to jabber his entire life story to the doc! It was too cute!!!

Seizures: At this point since Jack’s only had one episode, and it was mild – he does not want to put him on medication. Since Jack is showing abnormal readings from his EEG this puts him in a higher risk category for future seizures. The doctor said since Jack’s first seizure was mild this is an indication that future seizures would most likely be mild as well. If he has more seizures it’s likely he’ll prescribe anti-seizure medicine. We are to report any episodes to him.

CP: There are many different types of CP. It is diagnosed and named for the affected muscles. He diagnosed Jack with Spastic Monoplegia Cerebral Palsy…basically meaning abnormally tight muscle tone affecting one limb. In Jack’s case it is his right arm. The neurologist does not notice a significant difference in Jack’s legs – which we are monitoring. If it is eventually obvious that Jack is using his entire left side (arm & leg) better than his right side the diagnosis would be Spastic Hemiplegia CP. At this point this is not the case. To read more on CP and the different types, copy and paste the following link:

http://www.ofcp.on.ca/guide.html#06

There are several different management options we will explore. Currently we are involved in the most important – THERAPY!! We’ve been lucky to have been receiving services for over a year now. This has helped Jack so much! We will see an Orthopedic Doctor to discuss further management options like braces, Botox injections or even surgery. Since Jack is so young at this time, he will probably do well with braces. I think botox and surgery are for older children.

We see the neurologist again in 4 months.

All in all the appointment was very informative and given such daunting circumstances we feel very lucky both the seizures and the CP are mild. Jack continues to amaze me every day – there is no limit to what he can do!! Thanks to all of you for thinking of us and being there during the last few weeks. Please don’t hesitate to ask any questions. Jack is sacked and sleeping since he decided to stay up most of the night last night – and then decided he wanted breakfast at 4:45 this morning!?!? He’s been awake ever since…so he’s taking a much needed rest and I should too!

We took a mini last minute vacation to visit he beach this weekend and boy did our little family need that. For two days there was no appointments, runaround or phone calls. We got to be a 'normal' family doing a 'normal' summer activity...Jack enjoyed himself so much -- it was exactly what we needed!! We had a wonderful time!! I just added a vacation album to the photos section!

They called and told us we have a NEUROLOGY appointment Tuesday, 7/13 to discuss the EEG results...soooooo after all of that drama it's FINALLY settled! Thank goodness.

JACK WAS DISCHARGED FROM THE NICU FOLLOW UP CLINIC!!!!! His neonatologist feels Jack is doing well enough and is involved in all the appropriate programs that he no longer wants to see him!!

It was a relatively uneventful appointment -- we didn't really learn anything we weren't already aware of and working on. Jack will still be followed by his opthamologist, neurosurgeon, neurologist and Early Intervention.

It's sad in a way because we became close to the NICU staff and it's bittersweet that we've outgrown them. He asked that we stop in to visit so he can see Jack every once in a while.

I guess my guy is growing up!!