Nothing stays gold, Ponyboy

Yesterday we got an interesting letter in the mail.

Our private speech and OT services are provided by an agency I use to work for many years ago. One of the reasons we started Jonathan there was because we could get him evaluated quickly. We stayed because we really liked our speech therapist, Katy. It is about a half hour away, but we made it work.

Until now, apparently.

The agency sent us a letter stating that they were closing the location where our services are located, and relocating all services to their main location. Their main location is lovely; it is actually the location I used to work at. It is also about one hour away.


I had been struggling with what to do about our services, largely because I wasn't sure our OT was working out. Plus, the distance was starting to become an issue. I was 'on the fence' about what to do.

But it looks like the decision has been made for us! We just can't travel that far for services. I am really sad because... while I did have some reservations about our OT, overall things were going well and I felt comfortable. They were open to me participating. They know Jonathan... where he has been, what he has accomplished and where he has to go! Our new program of OT for 45 minutes and speech for 30 minute was really looking good. This wasn't really in the game plan for right now.


So now I have to get a new game plan. Do we continue to pursue private speech and OT? Or do we try and maximize our early intervention services and put our focus there? If we continue with the private speech and OT, where do we go? I want the best... the absolute best... for Jonathan. I think we have it in our EI, and I don't want to compromise with anything else! Could I manage to do it on my own? Should we take the summer off? Plus, we have the added issue of our summer services. We may not get to keep Kristin for the summer, so we would have to start fresh with someone new... at least for the summer months.


Ahhh... why can't this be easier?

Pia

I might be NUTS

Well, we finally got the EEG results!!!

NORMAL!

Hooray NORMAL! We love normal!!! Hooray hooray hooray!!!

Ok, now here is the nutty part. There is this tiny little illogical part of me that was disappointed that they didn't find something. Of course, I DON'T! But I think I am starting to crave answers to the question of "Why?". Why is Jonathan having these struggles? Why is it that he has such trouble with language... he is so smart in so many ways! And of course, there is the issue of guilt. Did I do something wrong during pregnancy to screw up his brain? Did we pass on crappy genes? Did I not stimulate him enough as a baby? Or now? What is going on here?

I have enough education to understand that this is not a simple cause-and-effect situation, and that we really don't know what is going on... and that guilt and blame are not important. However, not knowing WHY is hard.

As Robert R-H would suggest, is the monster-- hidden in the dark -- scarier than the monster revealed? I suppose it would depend on the monster.

Pia

No News is No News

6 months old

Ok, just a quick update for all you loyal friends dying to know what we found out from the MRI and EEG.

Well, let me just start on Tuesday...

When we left the hospital we were told that the results should be back by Friday, and that someone would be calling us with those results. Of course, I couldn't wait until Friday... so, being "that mom", I called on Wednesday and asked them if anything was back yet and... if not... when? I spoke to "Kelly" (our MD's nurse) and she checked his records and said that the MRI results were back and they were.... tadadaDA: NORMAL.

HOORAY FOR NORMAL! Normal means no major brain tumors. Or small ones. No malformations or head bleads or strokes! YEAH NORMAL!

Alas, the EEG results were not back yet, but she said we should know something by Friday. Ok, I can wait until Friday. We had a NORMAL looking MRI.... that should pacify me until Friday!

So on Friday I carried my cell phone everywhere, even to the bathroom. Now, Friday was a busy day. ECFE in the morning with Jonathan, cleaning my house because my mom was coming over to babysit, and I had to take my hubby to get his renal stent removed that afternoon. So the first moment I had to really call them... because I couldn't wait anymore... was 2pm as I was drving my hubby to the hospital. Here is how this conversation went:

B: Hello, Gillette Burnsville. This is Bethany.

Me: Hello Bethany. My name is Pia and my son is Jonathan P and he had an EEG and MRI on Tuesday. We were told that we would get those results by today. Can we talk to whomever can get those for us?

B: There are no nurses here to give you that information today. You will need to call back next week.

** Note: Bethany's voice was about as indifferent and politely robotic as could be. Cold would be a warm description of her voice.

Me: You are telling me that there are no nurses there at all? At the clinic?

B: Yes mam.

Me: But I was specifically told that we would be getting these results today.

B: There is no one here to give you those results.

Me: How can there be NO NURSES at a clinic??

B: The morning nurse left at noon.

Me: Why didn't she call me then??? Why would I be told we would find out on Friday if no one works on Friday?

B: I don't know mam. You will have to call back next week.

**At this point, my head exploded. In my mind I reached through the phone and strangled poor, emotionally cold and defective Bethany with my bare hands. In my defense, she was delivering me this news like I somehow was upset that my cable wouldn't be hooked up until next week... not like I was having to wait to find out if my 2 year old son was having seizures.

Me: Well, gee, thanks for all of your fine help (insert sarcasm). I can't wait to talk to you Monday.

So, hopefully Monday we will also hear the words normal. If not, I might have to drive to Burnsville to have a little "chat" with Bethany.

Pia

Kisses

Ever since I can remember, I have smothered Jonathan with kisses. Kiss showers, kiss storms... I'd rain kisses all over him. As a baby he'd giggle or squeal. As a toddler he'd giggle, laugh, squeal, or just tolerate it (as most toddlers do). However, he never kissed me back.

Today, Jonathan kissed me.

For months and months and months I have uttered the request "Give mama kisses!" with a big pucker-up face. Usually the response was a grin and to run away... prelude to a Kiss Storm. Recently, he started leaning his cheek into my lips... submitting to the kisses, tolerant of mom's need for the smooching. Today, ever so slowly... drool dripping from his slimy chin.... his chubby little lips met mine. I was so surprised that my face completely lit up, which resulting in his face completely lighting up with surprise at what he had done, and much hugging and kiss storming commenced.

Who needs words? I got kisses...

Pia

the Reason...???

Is this the reason for Jonathan's speech delay???

Today was MRI/EEG day. And a long day it was. I must admit, I think it went a lot better than I thought it would. I am also quite sure Dan would disagree with me. Dan was stressed. He has a very hard time seeing Jonathan upset. I do too... but I guess I have a little more tolerance for it.

.

The EEG was the worst part for me. He needed to be 'sleep deprived', so I woke him up at 4am. I am not a morning person, to be sure. He recovered well enough. But Jonathan HATES his head being touched. Especially by strangers. And for some strange reason, the marking, prep, and placement of 26 EEG leads on his head was just not his cup of tea! Go figure. I must have packed up about 2 bagfuls of toys.... sensory box of beans with animals, a vibrating cow, easter eggs with prizes in them, etc etc etc. Anything that I thought might distract him. And it worked... sort of. Mostly, he cried and fought the lead application process. But once that was over he actually did calm down, played a little, and eventually fell asleep. The EEG tech said it was a "good session", although she would not tell us if she saw anything. We have to wait until the DR sees it.

.

The MRI was the worse part for Dan. The plan was to use gas sedation to put Jonathan under, and then they would start his IV, draw labs, and do the MRI with sedation. Dan wanted to hold him during the initial gas sedation. It went well. Jonathan went out like a light. But, if you have never seen that kind of sedation it can be disturbing. Jonathan went from wiggling and fighting to his eyes rolling back in his head, going totally limp. We laid him down on the table and then needed to give our good-byes and wait in the waiting room. So NOT what Dan wanted to do. It was scary... while our mind tells us everything is ok, the heart says NO NO NO. It was tough. But by this evening Jonathan is back to his normal, happy self. We are a bit tired but relieved it is over.

.

Now the waiting begins. We should hear SOMETHING by Friday, but what we will hear is still unknown. I think it will be fine, but who knows. In the meantime, it is snowing and cold. I have to go grocery shopping. Life goes on.

Pia

Three Pans of Brownies

So I am making three pans of brownies.

Why, you might ask... aside from the chocolatey-goodness that my brownies offer... am I making three pans of brownies?

Therein lies the story of our weekend.

.

I must admit I was heartily looking forward to the weekend. It was my weekend to work. Twelve hour shifts, both Saturday and Sunday, from 7am to 7pm. Twelve hours in the NICU, with my work friends and adult conversation and a break from being mommy for a while. Usually, I am totally willing to give up some shifts... I'd rather be home... but having been off for well over a week, I was ready to be at work for a few days.

So when I arrived at work on Saturday morning, I was in a good mood. Even my 'heavy' assignment of three patients (two of them to be discharged... which is a lot of work teaching) didn't tamper my mood. I wanted to be busy! (Side note: I did find this strange, since our unit is very slow and canceling nurses left and right... hmmm). Anyway, as I was getting into gear... swinging into action.... I get the PhoneCall. Dan calls me, in obvious pain, vomiting, and says he need to go to the ER again for his kidney stone. I can hear the little man in the background giggling and laughing as Dan is puking.

My reaction (at least inside my head) is not that empathic. I'll admit it... I was a little pissed. But whatca gonna do? Kidney stones are known for being CRAZY PAINFUL. And as much I would like to be, I am not a completely heartless bitch. So, I told him I will make some arrangements and be home as soon as I can.

Brownie Pan #1 goes to our neighbors Darcy and Justin. I called them immediately after getting off with Dan and asked Justin (who was home alone) if he would mind terribly going and getting Jonathan until I could get home. Somehow I figured Dan wasn't able to be Daddy very well at the moment. More than willing, they came to our Jonathan's rescue!

Brownie Pan #2 goes to Barb, our other neighbor and phone call #2. She took my puking and in pain hubby to the ER (Dan had said he would drive himself!!! CRAZY MAN!). So, for him and all the other people on the road, we thank her.

Unfortunately, at my job, it can be a bit of a trick to get home. But eventually I managed to get out of there (after finishing one discharge.... can you believe it?) and collected my very distraught boy. My parents were able to come up and babysit Jonathan while I spent the rest of the day at the hospital with Dan. I made them brownies that day (along with dinner). Poor guy ended up with a renal stent! He felt rough. And, unfortunately, he has to go back on Friday and have it removed.. along with the stone. To top the weekend off, I developed a sinus and ear infection. We were a household of wreaks.

That third pan of Brownies? That goes to us. Heck, I figure after this weekend, and the MRI/EEG tommorrow, and the renal stent removal on Friday.... we deserve the chocolatey goodness.

Pia

Countdown to Tuesday...

Jonathan prefers naked

Much has been on my mind this week.

We see little glimmers of progress with Jonathan everyday. The latest is his "gup gup gup" sounds. He started them the other day when I bought him some new animal toys at Target. I am not sure they mean anything... Dan seems to think he is saying "cup"... but I am not convinced. Either way, it doesn't seem to be in context of anything. Just a sound. BUT, it is 2 consonants and a vowel combined together in a word-like way. Which for him is progress.

He also is enthusastically making raspberries at the TV and at us... usually in a turn taking situation or when we watch 'Shaun the Sheep" -- the alien episode with raspberry-making aliens (for those of you not familar with the raspberry... it is that whole lip-tongue blttthhhffff sound. Come on... you know what I mean!).

However, Jonathan has embraced the terrible twos with a vengence. He has been throwing temper tantrums, pushing limits, acting deaf, and generally getting on my last nerve. I find it so hard to know what of this is language-related and what is just being two. And being Jonathan. I am also getting frustrated because I see more and more how behind he really is. When he is soooo difficult to deal with and won't or can't listen to me.... it breaks my heart and makes my head explode.

Tuesday - EEG/MRI day - is coming up quick and I am excited and scared to pieces.

Dan was in the ER most of the afternoon yesterday with a kidney stone. He'd had one before... years ago..... so he knew what it was. But nonetheless, he was in horrible pain. We all piled into my car and I brought him to the ER. But I had to leave him there because Jonathan... being Jonathan... refused to sit calmly and play. He ran, threw a temper tantrum, tried to eat the fake plants in the lobby. I had no one to call to babysit him. Grandma is an hour away. It was one of those situations where I realized we really are on our own. We have support, but not consistant and lacking serious depth. And when it comes to Jonathan, I can count on one hand the number of people I actually talk to about him. And when it comes to actually dealing with his "issues", it is really only us. Mostly me.

This blog is sometimes the only way I can get things out there. I am not sure how to talk to Dan about these things... it isn't like he is coping so well himself... so I just write it all down and send it out to the Universe. I am reading other blogs too.... it is like this community of people with the same heartbreak... but it isn't the same as having a friend in the room who gets it.

Pia

Schuyler's Monster: A Review of Sorts

Image stolen from his website.

Hope I don't get sued.

.

I just finished reading a memoir called Schuyler's Monster by Robert Rummel-Hudson. Here is his blog: http://www.schuylersmonsterblog.com/ . Anyway, I just happened upon this book at B&N. Essentially, it is his story about his daughter and her "monster" : failure to develop speech and their subsequent battles to help her. It has been a powerful book for me to read. Not because there are any grand insights or conclusions. Rather, I have been moved by his honesty and humanity. He is flawed, his wife is flawed, they make mistakes... and yet they come together and fight for her. As much as she has a "monster" (as he calls it) and she is "broken", in his eyes she is so beautiful and strong.

.

This is not necessarily a gentle, feel-good book to read. He is blunt and honest about his feelings. He pulls no punches, uses no "safe" words. And that is ok... even though I might disagree with his take on some things, I completely understand his need for stark honesty. Being forthright and genuine is not a quality that is always appreciated... especially not in the tender-hearted world of special needs children... but I liked it. It was refreshing and sincere. And male... a voice not often heard in this area of the world.

My difficulty with the book was more personal. His daughter Schuyler (pronounced Skylar), when young, showed soooo many of the same characteristics as Jonathan it gave me the heeby-geebies. As the book got closer and closer to her MRI and the revealing of her "monster", I found myself getting more and more anxious. With Jonathan's MRI in less than a week, it felt really spooky. And when it was revealed (I won't give it away), I found myself feeling much less confident about what the outcome of our MRI will show.

Parenting a special needs child is a challenge that few people are truly prepared for. The uncertainties, the changes, the battles that have to be fought. They are unending. They can wear on the soul. And I think that the main challenge is the isolation one feels. Parents of typically-developing children can't really understand, and often the people most close to you are unable to be as supportive as you need. It can feel like you are completely on your own. A book like this helps because there is an instant understanding. I get him. And I would guess that he would get me. And for some strange reason, it helps.

Pia