Where are the parents?

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around......

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Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive!

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005.

I NEVER

I really never thought I would see the day that Alaina would be potty trained! Folks, I see the light at the end of the tunnel! Since Alaina's surgery back in September we have been working harder to set the routine and schedule of getting her to the potty! So was the CLC. Over Christmas break it must have just clicked with her! She was even waking up dry. I was in amazement.

She still has accidents every now and again. Also, I don't fully trust her in underwear in public yet, but for the most part she is potty trained. I'm all smiles about that! Yay for Dora underwear :)

We also had to cut back at the CLC this past month due to job layoffs :( It however has been a nice break from the fast pace routine we were doing day in and day out!

Update on Alaina

Hi all, sorry for the delay in updating you on Alaina. It's been 2 weeks post-op now and she is doing great! We headed to New Jersey for Alaina's surgery and we drove. Total time for one way was just about 13 hours! Thankfully we have some family that lives exactly half way in between our two destinations...home and the hospital :) On the Monday before her surgery we had a doctors appointment at 9:30 in the morning and then we had the rest of the day to play. So we decided to head towards the Hudson Bay and visit some places we had only seen in pictures! Ellis Island and Liberty Island. Plus, we got to see the NYC sky line! We had so much fun and so did the girls. Here is a fun photo of the girls sitting at the feet of Lady Liberty!Surgery was scheduled for 7:30am the following day! Yikes, that meant we had to be at the hospital at 5:30am. No fun. The girls did great though and they were thoroughly confused that we woke them up and went outside while it was still dark out, they couldn't quite figure it out! This is Alaina pre-surgery. Getting all checked in and filling out all of those wonderful questionnaires :) She refused the hospital gown, she knows fashion already at 4 years of age!
This is Alaina about 6 hours post-op. She did fairly well, considering. She cried a lot right when she woke up. Once she was able to sit on mom's lap she fell right to sleep. Once moved into the next recovery room she did okay and when we tried to get her dressed she through up all over. So we layed her back down and she slept for another 2 hours. We got bored fast! Addie did so well and of course the nurses kept giving her cookies and juice:) Alaina had to wear the knee immobilizers for 24 hours this is just so she can keep getting a great stretch on her hamstrings and after the 24 hours she needs to wear them during the night time. This is also to retrain her brain and body to not sleep in a fetal position. It's always harder to stretch out in the morning! She also has little casts on her feet. They are a lot like serial casting only closer to her skin. This is to keep her feet in a perfect 90 degree position so she can have great stretching and perfect positioning. These are to be worn for 4 weeks!
Here we are back at home. This is Thursday so 2 days post-op. She now has to take baths in the sink so we don't get her casts wet :) She thinks this is very silly!
Here is a photo I took of her bruises. Can you believe it no sutures, just very tiny pinholes where the "incision" took place.
The results that we have seen so far are just amazing. Alaina is doing things already that she was never able to do before, due to her severe spasticity! For example her sitting has improved 100% she was unable to sit in a straight legged position or get into that sitting position on her own and now she can do both. It is so strange now, when she is in bed she will call for me and I will go into her room and she is sitting up in bed. That has never happened. Another thing Alaina had done was an alcohol block. This was to help her to be able to separate her leg movements. She did a lot of mirror movement. (When one leg moves the other moves with it) She is now able to separate her legs completely and she has started to try and climb stairs another thing that was impossible for her before the surgery!

If you have a child that has spastic CP or know someone that has a child that has it, I highly recommend looking into Dr. Nuzzo's procedure!

Independence at it's BEST!

This video shows Alaina being super independent! The other day I was busy doing household things when all of a sudden I couldn't find Alaina. She had made it half way down the stairs all by herself and was trying to climb back up them! (Climbing is harder to do) I was so impressed by her bravery and that she knew to turn around and go down feet first. So, ever since then we have been making her do it all by herself! She is improving with each day! Just on Saturday Jeremy was downstairs and then all of a sudden he said there was Alaina :)

Also, another accomplishment was yesterday Addie was playing with the little people barn, (a favorite in our house) on the ottoman. Alaina really wanted to play with it so she had figured out how to pull up to standing and was playing with it:) We could not believe it!!!

On another note, a week ago I had to take her to the hospital to get some lab work done for her upcoming surgery. I got a phone call today telling me that her EKG came back abnormal. They said not to worry that they were just doing a follow-up for precaution, but as a mother how can I not worry? It is scheduled with a heart specialist on Wed, the 24th. So please keep her and us in your prayers! I will keep you posted!

Edited to say: Sorry that the video is dark and sideways :) I will try to get a better video so you can see more and so you don't get a kink in your neck! :)

My Baby is Back in School!

Alaina's first day of school was yesterday! She's growing up so fast! She had a great day and didn't want to leave!
Today I had parent/teacher conferences and they said Alaina looks great and is happy with how she is doing despite having the whole summer off! Basically this was a catch up with what happened over the summer!
I promise pictures soon!

Back to School!!!

I can't believe in less than a week we will be heading back and forth to Grand Rapids!!! This summer has just flown by! :( Although we are sad that summer is coming to a close we are excited that Alaina is going to be getting back into school and that means some major therapy! Also, everyday is just one day closer to us leaving for NJ and getting her surgery done! She has a doctor's appointment on the 5th of September. This will be a physical to ensure the doctor that she is healthy for surgery. Also, she needs to have an EKG done and blood work. One more step closer!

Pray for Alaina, she recently got the flu and hasn't been able to keep anything down! It's been a rough 36 hours in this household!

It's now a MEMORY!!!

These are just a few pictures of the event on Saturday! We had a blast and I am happy to say that it is now just a memory!

In case you are all wondering the grand total......just over $13,000

Praise God, he has supplied us with what we need again and again!

This amount will cover the cost of her surgery almost to the penny!

If you still feel led to give I am leaving the donation button up. Alaina attends a special school for children with Cerebral Palsy and Spina Bifida the cost to attend for the year is just over $15,000. We know that this is expensive, but we feel that this is the right place for her at this time in her life!

Thank you to everyone that made this fund-raiser possible and your generosity is immensely appreciated!