Tuesday, March 29, 2011

Education budget cuts

I have been watching the news and reading our local paper with a slight interest as everyone is discussing the statewide education budget cuts.  I did not think that it would directly impact our family in the near future since we are not teachers.  I never dreamed that our school district would cut the entire PPCD (preschool program for children with disabilities) at her elementary school for the next school year.

What does this mean?  It means that her wonderful teacher, aides and therapists that have made such a large impact on her little life in the short month since has been with them have lost their jobs.  I can not imagine how this affects their families.  It means that the children, including Reagan, are going to be transferred to one of the two schools in our district that still offer a ppcd classes.  Yeah, I guess I should not complain, at least it is still available, even if it is not easy.  The closest school that she can now attend is a minimum 45 minute car ride each way without traffic.

I am sure that this is a decision that was not made lightly, at least I hope.  However, it feels like someone has told me that education for special needs children is not important.  I feel like I have been sucker punched in the stomach and I'm not really sure to who she be on the receiving end of my retaliation.  I don't even know who to blame, not that it even matters.

I have watched before my eyes as Reagan has come out of this funk that she has been in for the past year.  My little girl that used to giggle and smile all the time has finally returned.  She is happy and glowing.  We share looks at each other several times a day where our hearts are speaking and I know that she understands she is loved and adored.  I don't know if it is just coincidental that this change for her happened at the same time that she started school and I can't say that I really care.  However, I will be a very upset Mama Bear if the transition to the new school does not go well.  If the teachers and staff do not accept her with open arms or if I no longer see that glimmer of hope in her eyes.

Sunday, March 20, 2011

Too cool for words

These were taken a couple of weeks ago but I never got a chance to post.  They make me smile every.single.time!

Reagan's best gansta interpretation, yep - she cracks me up!

a glance at the camera but still refuses a smile

Lauren hamming it up

sweet baby girl

silly Lauren

Thursday, March 17, 2011

Happy St. Patrick's Day!







Wednesday, March 16, 2011

One step forward, two steps back

Reagan has been feeling so well for the past couple of months, and we are finally seeing her energy bounce back after the bout with mono late last year.  She was starting to gain a little more weight and we were on the right track.  But, now she has the flu and it is the worst thing ever.  In the 6 days that she has been sick, she has not eaten anything more than a few bites of yogurt a day and I can visibly see how thin she has become in that short amount of time.

I never understood how unnerving it can be to have a child this ill.  We have been very fortunate to have all been very healthy, never getting anything more than a common cold or stomach virus that runs its course in 24 hours.  But, we have also never had a child in a daycare or school setting, subjected to so many germs.  It has been very scary to see her so out of it and sleeping about 22 hours a day, only waking when I go into her room to get her to take in some fluids.  And speaking of fluids, I am worried about dehydration and a possible trip to the hospital if I can't get her to drink enough.  Again, just worried and very concerned.

I am hoping she has a speedy recovery and that she can kick this virus in the next day and then start to eat again.  I am also hoping that Lauren can avoid getting the flu as well.  My Mom keeps reassuring me that children bounce back quickly and that they are resilient, and I sure do hope she is right!

This picture was taken last 6 days ago when she first started running a fever and feeling bad.  She is feeling so much worse now that I don't even want to torture her with a camera!

Sunday, March 13, 2011

Time marches on

A lot of times I feel that time is moving on around me but I am standing still.  It feels like I am counting the days of my daughters life, the countdown until a cure, but everyone else has moved on in life.  My world stopped when we got the diagnosis.  I know that I have to move on, that life moves on but it is still very difficult.

I still weep at watching other typical 3 year old girls discuss princesses.  I still ache over the lost dreams for my daughter.  It is a weird place to be in, one where I celebrate the success of a great transition to school but mourn that her first school experience is in a special needs classroom.  I try to live with Rett Syndrome but I also try to hide it, not telling new acquaintances that the reason that Reagan is not at the party is because she tends to have meltdowns on our outings so she is at home with a babysitter.

It has been 1 year and 2 months, and I still struggle with coming to peace with the news.

Tuesday, March 8, 2011

Happy Reagan

It turns out that school is a VERY positive thing for Reagan.  She is in her second full week and is already such a happier and alert little girl.  She enjoys being at school with her peers so much, laughing and giggling at the other children and engaging during things like story time and playing with toys.  She smiles so much in the afternoon when she is home that it makes my heart melt.  I love, love, love seeing her so happy!  

And as if that wasn't enough good news, she is also eating great.  Well, let me rephrase that...she is eating great for morning and lunch when she is at school.  I don't know what magic Ms. Susan has but she eats all of her food that I pack for her on most days and then some of the food that they have at school.  I did a weight check on her last night (on our scale so it's not very accurate for children) and it shows that she has gained almost a pound in the last 2 weeks!  Now, a pound might not seem like much but she's been around that 27 to 28 mark for so long and I would love to finally see 29 or 30 and make her doctors happy so we don't have to talk about a g-tube in a couple of months.

The teacher and assistants are getting to know her really quickly.  Apparently they are getting to know the many faces of Reagan, from happy/smiling to her "are you kidding me" face.  Yep, she is a girl that knows what she wants and her eyes and expressions are her main ways to communicate.  

Here is a picture that her teacher sent me of Reagan enjoying circle story time: