the family

the family

Monday, December 29, 2008

oh the joys of boys

Hope everyone had a great christmas, ours was nice, quiet and nice, we missed Harold being home, but we got to see him on webcam opening his gifts, so that was really cool. i got him a memory book from snapfish, 20 pages of photos of us and captions, very cool, he also got a small(much smaller than i thought...) digi pic frame, then he got a cool pair of PJ pants with super heros, his roomate tells him his pj's need a volume button.....i love it. :) life should be full of color hu? a lil sparkle to make life less ordinary.

we had a nice christmas, the boys ended up getting lots of gifts from our nurses that i didnt anticipate them doing at all, so it was very sweet of them all. the boys theme was basically STAR WARS as usual. they got light sabers, books, action figures, mini action figures, pj's and shirts all with star wars. they LOVED it. Zach of course got a buttload of gifts, ring stackers ...2, light up ball, glow worm, baby einstine toys, books, dvd's, christmas ornament, tickle me cookie monster, leapfrog toy,clothes and much more! very awesome. i even got a few nice things that was totally unexpected. our day nurse Alex, who is such a doll, i really hope she stays with us for a long while, got me a wallet, that i really needed,a wonderful candle and this awesome collage frame that i was eyeballing in kohls. another nurse got me a music box, very sweet. so it looks like SANTA really did come. :)

now the holidays are over and the kids are bouncing off the walls. remember when i said earlier that a lil color in life is good? brings a sparkle and such? well....the boys are like that, on a good day they warm the house and it glows with love, on the normal days its like our house has amillion christmas light on and its SCREAMING look at me!! sometimes they are a bit toooo colorful. Chance is still obsessed with numbers, i mentioned this with his primary doc today while we were discussing holding off on most of zach's shots till 18 months. the doctors eyes grew wide with concern when i said chance is 3 and counts to 100 and adds numbers all day and carries a calculator around, and i told him mikey is the same, that paired with their sleep problems and meltdowns, mikeys sensory problems and clumsiness the doc was at a loss for words at first. he then asked me how the boys vocabulary was, when i told him they were rather advanced in that they use words adults do, such as Embosal (sp) or calling me and Harold the parents, not mom and dad, i also told him that the neuro we were sent to see for mikey told me he couldnt help us, dr fontain just stared wide eyed and told me to keep an eye on them. i know in my heart he was thinking exactly what i have been for a while. i think somewhere on the autism spectrum disorder ASD is where the boys are, they are definatly not the low functioning classical autistic kid, maybe high functioning or aspergers or even nonverbal learning disorder. i just hope whatever the case we can get the help they need to let them succeed in school. im so tired of no one having any ideas and passing us on from doctor to doctor.
Chance has been REALLY colorful in public lately, letting out piercing screams and wailing over the smallest of things, not wanting to walk, not wanting to sit in buggy, mikey looking at him...etc, it wouldnt be so bad but the "looks" i get from the shoppers around like "what a brat" or "she needs to beat em" is about to kill me, ive attempted to do just that, but the spankings dont work, its not the problem, i wish i could fix them.
im exhusted and worn out.
Wed is my birthday!! yippie, lol. ill be spending a day by myself, alex will be keeping all the kids so i can go out window shopping or reading at the book store or whatever and then ill be having dinner with a good friend while her hubby watches the boys and her daughter, ill of course take zach along for the dinner. i am soo looking forward to that.
k, time to watch some tv.....
Happy New Year incase i dont get back on before:)

Wednesday, December 17, 2008


well again its been a lil bit, seems like time passes rather quickly around here and before i know it, its a new day, not that thats always a bad thing, but its hectic. Today Zach had his pulmonology follow up, he did WONDERFUL! his lungs sounded great, he is now been put on PRN (AS NEEDED) Treatments of his rescue nebulizer medication, xopenex, so instead of getting it EVERY 6 hours, he gets it as needed, this is a FIRST since he started the medication!! wahoo!! zach lasted the tops, 5 minutes, off the oxygen at the clinic for their lil "test" they do each time he comes in, usually he only lasts 30 seconds, meaning he drops his sats very fast without oxygen, today was MUCH BETTER!!the pulmo doc was very impressed and i was THRILLED! this explains why he has been tugging at the oxygen and such, he says he dont need it!! the doc said we can lower the oxygen to 1/2 litter, but no further for now, we need to wean off his diuretics first and then the oxygen, so were making progress!! Zach has also been making progress in therapy as well, rolling back and forth and attempting to get his knee under him (you need to do this to crawl) its said a "normal" developing baby when learning how to do something such as rolling or climbing will do the activitie 1500 times a day, so zach is just "being normal".

Mikey has his christmas party tomorrow, can you believe its nearly christmas already? wowzers, im telling ya, time flies~! im baking cookies tonight for the party, ooey gooey chocolate and lemon cookies, yummo.

Mikey is doing pretty good in school and seems to enjoy it, i think all the extra help and tutoring are paying off, thank the heavens!!

Chance on the other hand, im not sure what school will hold for him, he already counts to 100, without skipping any, counts by 10"s to 100, spells, MICHEAL, says all of his abc's in order, knows his shapes and colors, is starting to try to sound out words and is now counting backwards from 10-1 perfect and i heard him today attempting to count back from 100 he got to like 96. i guess he is picking up where we are working with mikey, but holy moly!!

overall the kids are doing good and im waiting till winter break is here so i can rest for a bit at home.

Harold recieved his tree and gifts, so it was nice to know he is getting some christmas cheer too. he seems like he is doing okay, we miss him and the boys miss him a bunch, just hoping next christmas he will be home with us.

My friend had her beautiful baby on dec 5th, she is a beauty. she was born with CHARGE syndrome, parents had no clue till after birth. she required some extra oxygen for a few days, but is off of it now. she had a feeding tube placed surgically at 8 days old, she cant swallow for now, so this is the way she gets food for now. her ears are slightly different (i think they are adorable, like lil elf ears) but this is also one of the signs of the syndrome, and she can have vision and hearing problems, worse case, blind and deaf, not sure the extent of it yet. she also has a hole in her heart, they think should close on its own, i believe she still has some fluid on her head that they are watching, and other than that she is great! she is a doll, they call her snowflake and tomorrow ifinally get to meet her! i cant wait!!

and something i think santa should know, before he passes me up this year i have one thing to say...... I CAN EXPLAIN...... give me one chance:)


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