My kid is such a trooper!

Today Princess Bear (PB) had a cookie swallow test. For those who aren't familiar with this test it involves drinking various consistencies of barium while being x-rayed to see if you are aspirating or not. PB has gone through this tests basically since birth. We knew that PB had reflux within a few days (actually my best friend figured it out...I thought she was just spitting up!). Anyway, at 3 weeks old I was nursing PB who decided to add the first of many gray hairs to my head by turning blue while nursing. We were actually at the breast feeding resource center (PB was nursing for an hour at a time every hour and a half... she was killing me!) so they sent us to the pediatrician immediately. They checked her pulse ox numbers and decided the best route was admission into the hospital. Now please bear in mind that at birth PB was in the hospital for 5 days. We'd been home barely 2 weeks and we were back. Well, the thing we walked away from this particular hospital stay was that PB not only had reflux but she also silently aspirated....both during swallowing and during reflux for liquids to enter her lungs. She was sent home on an apnea monitor so if she did reflux enough to interrupt breathing it would sound so I could get help. She wore that awful thing until she was 10.5 months old. She was put on thickened liquids and has been on them to varying degrees since then. I told PB about the test last night because I didn't want to spring it on her. Its always a fine line with kids...you don't want to freak them out but what is worse being a little scared and having mommy reassure you or being very scared because a procedure was sprung on you last minute. PB is still very scared of shots after all of the needed ones for kindergarten and the last round of blood tests for the endocrinologist. I assured her that there were no shots involved and she seemed to be relatively ok with everything. This morning we talked about it again & she was ok especially because my mom was going to be there to pick her up and then for the test as well. What is it about the best laid plans?!!!? PB was in an assembly when I went to pick her up so I switched plans & dropped my mom off at work. The plus of her working at the hospital is that she can meet us whenever PB is in for anything. I explained to PB the change of plans and that she couldn't eat until after the test. That didn't go over so well. Finally its test time (I'll skip over the admission process....lets just go with the fact that PB is entirely too familiar with the hospital!) The test was going relatively well & PB was holding court as she tends to do. Every couple of swallows she would stop drinking and change who was holding her hand and who was holding the cups for her. I'm doing my best to keep her calm but also watch the monitor (you see things in real time) and listen to the speech path (who we've known since PB was a baby) and realizing that things are going as smoothly as they should. In the meantime my mom is promising PB that this is the last time she'll have to do this test....hold the presses....is my mom not watching the same test I am?!!!? I tried to nip this one in the bud but she keeps on murmuring over and over...this is the last time for this test. It was like laughing in the faces of the g-ds. Test finishes and ta da............. PB is still in moderate danger of aspirating. She doesn't need thickened liquids but cannot drink out of an open cup in the near future. She has to use a sippy cup (we tested 3 of them) or a cocktail straw (a regular straw would allow too much liquid). Now since we're having so many problems with the school I'm sensing a big problem with lunch time since they are doing such a good job monitoring everything else. The plus side of all of this is that PB went skipping out of the hospital with a smile on her face and acted like she didn't have a care in the world! Me...I was ready for a nap! Goodness...my kid amazes me and makes me so dang proud!

Isn't it amazing....

I must admit I've been in a bit of a funk lately. As much as I was looking to the school year beginning again (much more for Princess Bear than myself... does that make me a bad mom?) its been very bittersweet. I miss the carefree feel of summer. I'm highly unmotivated in my chemistry class. Unfortunately I need a swift kick in the arse because I need to pass this class and do it well. I've been planning on applying for the dental hygiene program. Applications for next fall have to be completed by Feb 1st 2009. I MUST have completed and pass this chem class before I apply. I'm also giving some consideration to this program. I could handle working for the government again! (Thinking FEMA)

Anywoo~ I digress. I'm in a funk and Princess Bear (PB) isn't a happy camper either. I know that my problem is my depression as well as SAD kicking in and kicking my butt. Add basic exhaustion to that & I'm not happy. Princess Bear (PB) is in a funk too. Its breaking my heart. She loved school so much the past two years and was really looking forward to returning this year. This is a new room, new teachers, new routines and it isn't sitting very well with PB. To top it off she isn't wanting to wear her eyepatches. On Tuesday morning she was literally hysterical about the dual thought of wearing a patch & returning to school. This is so not normal behavior for her. To add insult to injury I'm about ready to blast the school for some bits of stupidity on their part. After all the hulabaloo about the air conditioner they aren't even sitting PB near the AC unit. On Friday she was a table away...not bad but why? Yesterday when I took her in she now has a permanent seat...all the way across the room from the AC unit. HELLO! If she overheats she cannot bring her body temp down well by herself. Consequently seizures are a very real possibility. I don't understand why they aren't taking this seriously. The other half of this is that PB is supposed to have a one on one aide for PE to monitor her so she doesn't over heat. It was the only reason I signed off on her IEP. I really wanted to keep her in adaptive PE. I found out on Friday that they haven't had her one on one aide. I was ready to launch. I mean I walked out of the school, buckled PB in & called Mason thinking he would calm me down (he's the somewhat significant other and my constant voice of reason). He was equally upset. That just spun me up even more. Tonight is the open house. I'm going to try to walk in and not do bodily harm to anyone. Also, the last 2 years PB was in a room of 10 kids. In her IEP meeting last May we asked about class size since they really wanted her in this integrated room. We were told they had 20. Ok. I understand that she has to get used to a bigger room but that made me nervous. They have 27 kids!!!!!!!!!!!!!!!!!!!!!! My child is so unhappy and by the time she gets home in the afternoon she is so moody, clingy and generally unhappy its just downright sad. I don't know what to do or say to make things any better. Yesterday she went in her room and sat on her bed and just started strumming on her guitar (after she closed the bedroom doors). This isn't my bright, vivacious, fun loving little girl.

Today its been raining buckets all day. I don't like rain. Actually I despise it. I will at all costs avoid going out in the rain. I'm sure this hasn't helped my general outlook. I went to pick up Princess Bear from school. I rush out with an umbrella to get her. She wanted to help hold the umbrella and was laughing with complete glee and stomping in puddles. This kid LOVES the rain. She wanted to get out & dance in circles. It just made my heart smile. Isn't amazing that even in the middle of a rut it doesn't take much to make you appreciate the important things?

Another day another Dr's visit

Well, we're now at more than a week since Princess Bear (PB) got sick. The coughing has gotten absolutely horrid so I called to make an appointment for today. We couldn't get into her pediatrician but a nurse practitioner instead. The good news is that PB's ear infection is completely cleared up! Then such as the life with PB you take one step forward and 3 steps back. She officially has been diagnosed with allergic constrictive airways. Now since I'm severely asthmatic & the idiots other kids have asthma this shouldn't be a surprise. Just one of those "Dang I was really hoping we didn't have to deal with this". Oh well, can't win them all right? I also found out that the possible reason PB has been such a devil child is a reaction to the albuterol. Know I feel like the worlds worst mommy since I was being all you have a time out and it wasn't really her fault. They've switched to a different neubulizer treatment and daily pulmicort so hopefully PB will stop sounding like she wants to be a living lung donor (without the use of anesthesia or a hospital) Is it awful that I'm totally ready for my child to go back to school? I really want (actually its probably crossed to a need at this point) some downtime. I love PB with all my heart but I also know that she's a bit more spoiled and a way lot less disciplined that she should be. I also know that this is all my doing. Unfortunately its that guilt complex of having a special needs child. Unfortunately its biting us in the butt and I'm working my tail off to have things turn around. That said I also do my very best to get all errands done while PB is in school. Its just so much easier and saves the bit of sanity that I have left. I still need to buy things to complete Mothers Day projects and I need some Mothers Day cards. I feel a midnight trip to Wally World coming on...anyone want to join me?

Other than that things were low key today. I got the notification of the rescheduled IEP meeting for PB. Its set for the 19th. I'm having a hard enough time with my baby turning 5 soon. Then add the whole kindergarten factor to it and I'm ready to lock the kid in the closet and tell her to stop growing up. PB started special ed when she was 3 so she's been in school for two years now. The first year was just 1/2 days but this year was all day. The idea of kindergarten shouldn't be so daunting but it is! Then you can add the fact that PB has been slated for a nontraditional segregated classroom. Basically its a kindergarten room with two teachers; one "normal" teacher and one "special ed" teacher. The feeling is that she's made so much progress that this is the best move for her. I'm worried that she's going to get lost in all the confusion. I won't say for a moment that PB has made a huge amount of progress. At times its almost miraculous if I sit back and think about it. This child was basically non-verbal when she started in August 2006 (she had approximately a dozen words under her belt). At her last Easter Seals eval she had a vocab of over 250 words. The kid sings now, plays with dolls and has a huge amount of compassion and empathy for her friends. Its so neat to watch her grow. I just hope that this new classroom is the best for her.

Now I'm going to sign off and start working on my Mothers Day gift for my mom. While watching my tape of Criminal Minds of course. My mom and I didn't have the almost weekly debate of how Criminal Minds is such an irresponsible show because they show things in too much detail and give people ideas. UGH! If you're that sick you probably aren't at home checking CBS for ideas! Just my take!

A Chance to help an awesome Little Boy

This is a petition for Jake Grys' family to win a home makeover from Extreme Home Makeovers. Please please please forward this to everyone you can (after you've signed the petition yourself of course!) I don't personally know Jake but I have seen him many times when I was at Easter Seals with Princess Bear (they were both part of the fund raising campaign video last year!)and he is always in such a wonderful mood and had an infectious smile. This is an awesome opportunity to help his family out. Again the link to go to is:

http://www.gopetition.com/online/11829