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Dad, Mom, and baby Meghan

Dad, Mom, and baby Meghan

Meghan through the years

Meghan's age

Lilypie Kids birthday PicLilypie Kids birthday Ticker

Trisomy 21 trio of cuties

10 Things Every Child with Autism Wishes you knew

Saturday, February 28, 2009

Finally a twinkle and a smile

Meghan is finally feeling well enough to joke and laugh with us again. Poor Meghan has been sick two weeks, so she has had a rough time of it. All together she has lost 8 pounds, she looks gaunt, especially her face. I can see her ribs too. Stomach flu followed bu another flu and just being miserable, and then strep throat on the heels of that. Poor baby. I can't tell you how relieved I am to see her smile again.

Meghan loves daddies Zune, and I would bet she would cherish one of her very own too, we would have to save up for that, but maybe it would be worth it, maybe for her birthday? She is listening to and singing along with "I'm a Barbie Girl". Too funny, but she loves Barbie dollies now, so it makes sense, right.

Kara and Amanda HAD to get in the tub, especially Kara, who gets Rastafarian hair if we do not wash it often. While she was really ill, she slept a lot, and we do not do baths with respiratory illnesses, so she was grungy. What sent her into the tub yesterday was the applesauce in her hair, she decided it was hair gel. LOL She also kept getting in the tub, telling us it was time, she felt well enough for her bath!
She decided to help Amanda get her hair washed, she pretended to get shampoo and wash Amanda's hair, and we thought it was so adorable, but soon after the pictures were taken, she grabbed Amanda and shoved her under the water, Amanda was so shocked she just lay there under the water, her mouth frozen in an O. Of course we scooped her up, but she was scared and neither of us could figure out why Kara did it. It happened so quickly we were shocked. It also illustrates why parents need to be there constantly while their kids bathe.

Gotta love that dirty little face, isn't she adorable? Amanda has a runny nose, but no fever and no signs she will get this flu. I really do believe it is because she never brings her hands to her mouth even more rarely to her nose or eyes, it is a little odd that she does not mouth things. Kara can't seem to keep things out of hers, and Meghan chews on her thumbs, no guessing why they both got sick. I was sitting here trying to beat a level in Bejeweled 3 (blasted game is giving me fits, and yes, I play video games) and I heard Amanda giggling behind me. Our kitten Skunky was purring and rubbing herself all over Amanda, and Amanda loved it. She and Skunky seem to adore one another, it makes me so happy to see Amanda attach to the cat and vice-versa.

I got a call from the SC yesterday, she was letting me know that due to the budget cuts it is likely Amanda and Meghan will also lose their in home therapy and once again made the beat the dead horse statement that; "The schools should be covering all of their therapies, not US". Needless to say, I am sick to death of hearing this statement, if the insurance pays for the therapy, then it is not for her to say whether the schools should, I have nothing against the therapists at the school, but they do not have the time to really work with the students in a school setting, so I do not feel it is as beneficial. There will be a time when Kara and Amanda will not need all the extra therapies, but right now I am fighting for all they can get to help them catch up. When we adopted Kara and Amanda we promised their countries we would take care of them, would get them the help they needed, we will keep that promise to them for both girls. (For Meghan too)

The SC said Meghan will lose her swim lessons in May, when her FSP renews. What was relayed to me was "These therapies are consultative, and they are designed to teach the parents the skills necessary to continue the instruction in the areas where the child is lacking" (Hmm, so those years in college the therapists spend were all for naught?) Yes, so what if you cannot swim, how will you help your child become a good swimmer? There are so many things I can say about that statement, but bottom line is, half the time I hear that a parent is not educated enough to address their child's special needs, hence the therapy the children receive, now they are saying that we will be taught to do it ourselves, and do not need the professionals to help us? Anyone else notice the hypocrisy with this line of reasoning?
I am weary of all of this, but will do what I can for my family.


GoldenAngelsWorks said...

The pics are adorable... I am so happy to see that the girls are doing so much better.

I am also sad to hear that alot of the help that they need is being taken from them.

carol said...

The girls look like they are finally feeling better. I hope you,Tom, Julia and everyone else that was sick is finally on the mend.
I bet they enjoyed their bath. Taking a shower usually makes me feel better.
I am sorry to hear about all of the budget cuts. I pray something can be worked out.

Burt&Vickie McCumber said...

Your girls are absolutely adorable. I, too, am dealing with my daughter loosing all her therapies. I cannot fathom doing all this on my own. I know this is not right, but am having a hard time finding a way to fight and make a difference.

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