Saturday, January 31, 2009

Tonsils be Gone!

Well, just as I thought, MM will be having her tonsils removed along with adenoids & possible tubes put back in her ears. I am not too worried about the surgery. We will have to stay over night though, possibly two nights they said. That will be rough. Surgery, then her not in her own environment!

I LOVED the new doc, btw! He had actually read her chart before he came in. I was all ready to plead my case. None of that needed. He said they would probably have to come out, looked in her throat for a half second, said "Oh yeah, they need to come out". He then said most kids go home, but she will have to stay due to her ASD & CP. He is most concerned cause she can't tell you if she is hurting or something is wrong. Also, he wants her to have IV antibiotics after due to her auto immune issues. WOW. Okay. Then he scheduled it for Feb 19. That is before I could even GET IN with the ENT we used in the past. WOWEE-WOW!

Now, the bad news is my surgery is the week before on the 11th. We are going to have a super hectic mid February. Also, we will be funding two different ENTs family vacations this year! LOL!

I am still planning on giving the IEP update, but it will take a lot of time to type. I need to get housework done this morning.

Tuesday, January 27, 2009

Not to keep you in suspense

IEP went okay, not great, just okay. There are a few things I am not very happy about. We will be having another meeting. I will update later. I need to decompress. I hate these damn meetings. I hate having to go through this. I want to scream, cry & stomp my feet that this isn't fair.

Monday, January 26, 2009

Manic Monday

I have a lot going on.

First, MM goes to the ENT on Friday. I am sure she will have to have those monstrosities known as tonsils removed. Poor thing is still not eating great, nose running constantly & lots of coughing. We are almost done with the antibiotics & I am sure by next week she will have the reoccurring infection. (Not feeling very optimistic this morn)

Tomorrow is the rescheduled IEP. Need I say more? Those yahoos still did not even give me the evals or reports! Thanks for all the advice you guys have provided. I am reading it & taking it all in, evening adding it to my notes for the meeting. I am going to give them the benefit of the doubt, as I try to do, but am sure I will be upset as usual. (again with the pessimistic view)

They scheduled MY sinus surgery for Feb 11. If I do not have it done then, I will have to start all over & have a different doc do it. The wonderful doc I found is relocating back to where she came from. Sux for me! It really has taken me a long time to build back up the courage to go & make the decision to have this done. The last time I had the surgery, in 2000, I got septic & almost died. YEAH- good times there. I need this done though. It will hopefully help my blood pressure, headaches & just generally improve my life so I don't have to deal with chronic sinusitis all the time.

I have to get MM's other appointments scheduled or rescheduled (eye dr, developmental specialist, 6 yr check up, etc.).

BIG news here too. My baby has a very wiggly bottom tooth. I will try to upload the video of it. I am sad & glad for she growing up.

We (DH & I) are going through an autism sux phase right now too. We both are in a bit of a funk cause these illnesses have really set her back. Lots of regression going on, has gone on. It is not just he autism stuff either. Her legs are so stiff & she lost some of her good gross motor gains. He, who is usually so positive, is just as anxiety ridden as I. This is so darn hard.

Did I mention I had my annual girlie check up last week? That will have to be for another post. I just can't think about it right now.

I know so many of you here in blogger land are going through just as much & many much worse than we. Where can we get in the "Give Us an Effing Break Line"?

(tried to cheer up by adding the valentine stuff to the blog. I LOVE valentine's day. it is such a cute, made up holiday. even dressed the girlie in valentine's attire this morn. I know it is early, but how can LOVE not make you smile?)

Tuesday, January 20, 2009

Pediatrician Update

Took her back in. Her tonsils are HUGE! They reswabbed her & now she has strep AGAIN! We are waiting to here from the ENT either this afternoon or tomorrow. They want to get us in ASAP cause they need to come out more than likely. I bet they will put the tubes back in as well. Poor thing, she never complains about pain. We just have to guess cause she still won't eat, feverish on & off and just not herself.

For the most part, we have been pretty fortunate with her autoimmune issues. Now, it seems like she is sick every time we turn around. I hope that this will help cut down on some of the infections. I also wonder if her being in constant stressed out mode at school isn't contributing to this.

Thanks for all the prayers. Will keep you posted.


IEP cancelled cause, in the south here, a smidgen of snow calls for the closing of schools. God intervened & took care of my dilema about the no reports. Once again, a reminder that I need to "let go & let God".

About the reports not being done:
One of my IRL friends brought up a great point (can I add she has a special ed degree & is an assistant principal) that what are they going to do on Tuesday? Were they all going to run in there first thing this morning & bombard her to get the reports done before 10:15? I am curious to that answer too. It will definitely be brought up as part of the request for records, they need to let me see them part of the law.

Thanks so much for all of your support! I have stressed myself sick, literally. MM is still under the weather & we are heading back to the pediatrician.
Now, I just have to wait for the reschedule.

Friday, January 16, 2009

Need IEP Advice/Help Badly!

I sent an email this past Monday, asking MM's case manager for the reports before the IEP which is Tuesday. There is no school Monday due to MLK day. MM is was very ill today. I sent an email asking if I could pick them up today. She sent me an email telling me they wouldn't be done since MM was absent today and they will be available for review at the meeting. WTF? They were waiting till the last possible minute to get them done? What would you do? HELP! What are my rights here?

I am so pi$$ed off right now! I can't see straight! I just got to the email this evening since MM has been so ill!

P.S. An aside here, her absence will be excused cause children didn't have to attend today due to the single digit temps. They had no clue she would be absent due to illness.

It's the Most Awful Time of the Year

Yep, it is time for the Annual IEP. We have it on Tuesday @ 10 am.

Am I dreading it? Yep. Am I worried? Yep. Am I busy getting my arguments ready? Yep. If any one has any suggestions for me or ideas on goals to add, please feel free to post in the comments. Many of you know the trials & tribulations we are having with eating, bathroom & coats as well as just general school stuff.

To top it off, MM woke up with a high fever today. I am waiting to see what declares itself. Is it strep again or another UTI?

To say I am stressed is an understatement.

Thursday, January 8, 2009

Therapy Waiting Room

One of my first pieces of advice is in regards to the Therapy Waiting Room.

At first, you will dread the room. It is where you first make your entrance and see all of "those children". The ones that are in desperate need of help. You will sit there, holding your little one on your lap and anxiously await your child's session. You go back & watch as they evaluate the child. Then you get all the info & find out you will be making many a trip back to that waiting room. When you first start therapy you want to watch everything they do with your child. You want to observe so you can duplicate the toys, exercises, equipment needed to help your child. I don't know about any of you, but I took notes in my little notebook. I would also try my best not to intervene & let her "get out of" her exercises. You will learn to trust the therapist with your little one & see they are capable. Then, one day, the therapist will suggest you sit out in the WAITING ROOM while your child gets therapized (my little word for it).


That is what I thought. Then, I found out she did a little better without me there. She learned to not be dependent on me for prompts. She got comfortable & came to love those special people.

And there I sat in that WAITING ROOM.

Slowly, my eyes were opened. "Those children" were just like MM. They needed the extra help to function in this world. "Those children" had mommies & daddies just like us. They were just as nervous, anxious, unsure of the rest of the day, let alone the future. There were also the parents who I looked up to. They were the ones who had an older child. They had been down the road, making so many trips. They knew where most of the bumps & roadblocks were. They appeared to be able to navigate the new potholes that crept up with grace & finesse.

I actually began to enjoy my time in the waiting room.

Let yourself make friends with the other parents of SNKs in the Waiting Room. They are valuable resources. Sitting out in the waiting room while your child gets therapy is wonderful. First, let them take care of your child for the 30-45 minute session so you get some "down" time. You don't have to be back there for every session. If I don't feel like talking to anyone, I bring my laptop and am able to get a lot of things done. Second, talking to the moms in the waiting room teaches you so much. They have been there, done that & have all the tricks to getting you access to local services. Third, it is very therapeutic for you. I find it to be a mini psychotherapy group many a time. They are in the same boat as you and REALLY understand.

It is that camaraderie I have come to enjoy, even look forward, as I take her to therapy week after week.

My Contribution

In addition to the daily going ons of our life & all the things that go along with having a SNK, I am going to try to add something to this blog. I am going to TRY to talk about our therapies, our routines, things we do to make life livable with CP & ASD. I am hoping to help others out there on the road or those just beginning the road. My blog traffic has picked up quite a bit. I don't just want to be BP & M-ing (b!tch, p!$$ & moan) about our life. I feel like with all the experiences we have encountered (0r endured) over these last almost 6 years I might be of more assistance to others. It is actually more than 6 years cause I might also actually blog about our experiences with pregnancy as well. We have had a long hard journey & there should be some better way to share. Hope you hang around.

Sunday, January 4, 2009


I love it when my sister comes. I hate it when my sister comes. HUH??? Yes, you read that correctly.

I love to see my sister. She is so funny. We laugh a lot when she is here. I try to have as good a time as possible. I don't get to see her very often cause she lives about 9 hours away. She is so patient & understanding, continually making the trek down here since it is hard for us to go any where.

I hate when she comes cause MM's disabilities become a giant elephant wearing a strobe light in a room that is only 200 square feet. MM does not like my nephew, the K-man. He is pure boy- rambunctious, zealous & happy. For some reason, he stresses her out. This, along with people being in the house (did I mention my sis has to stay at a hotel as well which also adds the money factor in) for visits, the change in routine, is too much for her. She spends a lot of the time crying, hiding or stimming. It saddens me so. I tried to do all the tricks for her. It doesn't really work. She is just a mess the whole time. She doesn't eat well, sleep well or function.

It breaks me down. I get stressed myself. DH gets upset which also adds to the stress level. I don't know how to help her. I realize that getting her out of her comfort zone is nothing but chaos for her. I realize that this (autism) is FOR REAL and this is not EVER going away. I also tear up as I share in the joy of my nephew and all his neurotypicalness (is that a word?). He is almost 2 years younger than MM and has surpassed her in many ways. He can run endlessly, he can write & draw pictures, he feeds himself, he gets in & out of the car on his own, etc, etc. The second he sees you, he looks at you and starts running. He jumps into your arms & gives the biggest hug that makes you feel all warm inside. He wears you down (in a good way) with his endless questions, endless pointing, endless calling of your name for attention. He WANTS to play with you, talk to you, look at you, just be there. Imagine that. He wants to play & interact with MM so bad. He tried so hard to engage her, but she was having none of it. It was so cool & so heartbreaking at the same time.

I am so used to MM with all her little quirks and how far behind she is that I "forget" what a "normal" child is like. I guess I don't really "forget", I just have never experienced "normal" from a parenting standpoint.

It makes me feel trapped. She doesn't like to go anywhere. She doesn't like anyone coming here. DH doesn't get that much time off from his work. We have no one besides my mom that could really stay with her if we wanted to go on a vacation or just to visit family. I want to scream & cry that this isn't fair. It's not like I want to go to Vegas or Jamaica. I just want to spend a few days with my family & enjoy it. It is so much work & so stressful.

She seemed to do a little better this visit than last. One can only hope that each time she will adjust & get better.