Tuesday, July 31, 2012

2 year Family Update

Alright, an update on the family is overdue.

You are probably are wondering why I could go TWO YEARS without posting and I've posted a few times in a week.  Well...that's what VACATION is for, right?  Actually, over the last three weeks I have been preparing for the new school year and I'm finally done...and still have 4 days left of vacation!  Pretty pathetic vacation time when you look at 365 days in a year, but I'll take what I can get.  ;)

For those of you who remember where we were 2 years ago, Miracle is still very time consuming with her needs.  She will be three in September!!   She started playing with toys this winter and her vision and arm control are getting better, so she's actually been learning to entertain herself for periods of time.  We also got a wheelchair in December and she is enjoying sitting in that more often than our laps these days.  She still prefers the floor, though.  And our laps after dinner closer to bedtime.  And still takes all her naps in my arms.  We are working on this... ;)

She has just recently learned to roll on her own through an intense physical therapy program in Pontiac, MI called Euro-PEDS.  I was very impressed with the program when she came home rolling and taking her first steps with a gait trainer! She receives physical, occupational and speech therapy all twice a week and it's 30 minutes from our home.  That kills our homeschool day.  We are trying to do dual therapy and cut down on how many times I have to leave the house in a week.

 Miracle at Euro-PEDS in Pontiac, MI doing intense physical therapy

Sadly, she stopped nursing at 2.  I wanted to nurse until she was taking a bottle again, but after seizures (I assume) her ability to latch on and stay on to nurse was getting worse daily.  We also were teaching her to bite on food and she loved to practice her new-found skill while nursing!  And she didn't just bite, she never let go!  Between biting and taking close to 50x to latch on each feeding, I had to give up.  It was too stressful for both of us.  Unfortunately, she is now full-time g-tube fed.  We will get back to oral feeding some day.  I just don't have an hour multiple times a day to devote to working on oral skills and practicing eating, which is what it will take to get her eating again.  I have lots of stretching, massage and therapy to do with her daily and it hasn't been getting done on school days either.  I feel like a Special Needs Mom Failure most days.  I still will never understand completely why God gave me Miracle after giving me four other children and I still have a desire to have more!

Yes, undeniable insane. That's me.

She got hearing aids at 18 months, though I had been concerned since she was an infant about her hearing.  At least she has them now.  She cries when you forget to put them on after naps or wait too long in the morning to put them on. Apparently the first 18 months she had a hard time hearing my voice (heartbreaking for me) and could only hear when her siblings screamed, cried or yelled.  THAT is why she always smiled when they cried.  We always thought that was funny, but really it was cause it was the only time she could hear them well.  Eh, I think she still smiles when they cry... But, by the amazing power of technology, Miracle can hear just as well as I can now (it just sounds like everyone is talking through a tunnel).

Wish we could fix everything that way.

She also uses hand splints to keep her thumb out and in a useful position, ankle-foot orthodics to keep her right foot from getting contractures in her ankle from constant pointing of her toes and high tone, a stander to work lower body muscles and practice head control and she will hopefully be getting a gait trainer soon, too.  She took 16 steps in a row on her own with a gait training at Euro-PEDS this month!  Never been so excited for the first steps of any of my children...  She also takes Zantac and two anti-seizure medications daily.  She has been having seizures more regularly since February of this year.  We went 1.5 years without them.  Very disappointing.  And now she is regularly getting boils on her bottom - I assume from being in the same positions all the time.  Sigh.

Miracle with her new therapy kitten, Oreo

Homeschool has been rough the past few years.  Still enjoying it, just finding it difficult to get it all done.  The year Miracle was born (2009-2010) we started Adventures in My Father's World and Sonlight K science and it took us a year and a half to get through it.  Their math, phonics and grammar was all done in a reasonable 9/10 months.  Then in 2011-2012 I created my own curriculum studying cultures and geography around the world and I didn't get as much done as I wanted and we schooled through June.  Though when I gave them their final quiz and saw all that they had learned, I felt much better.  Again, their math, grammar and self-studies were done in May, just my teaching didn't get done on time.

Needless to say, Miracle takes up a lot of my time and I love her to death.  But, I realized this year bouncing between my 5 children, that I truly needed help.  More than I wanted to ask for.  So I began a search for some kind of respite care and found out that she qualifies for nursing care via her g-tube and I can probably get whatever I request!


So, I found an agency and we've been working all summer getting things in place for help as soon as school starts in the fall.  I originally requested 2 hours a day.  Then I planned my homeschool and decided I needed 10 hours each day.  ;)  Right now they will be coming in 4 hours a day and I may request a few more hours on certain days once we get started.  We had looked at Preschools in May because I was desperate to get a few hours of school in without interruption.  I just do not want her away from me AT ALL.  I wanted to cry thinking about all the stress I would have wondering how they were caring for her and what she was doing knowing she couldn't tell me herself.  So glad we found another route.  I think I would have taken a year off of school illegally before taking her to Preschool.

An update on 2 years of my life and it's kind of depressing.

It has been rough and stressful, but I'm still loving being home and my kids are too.  They are doing excellent in their studies and I'm very proud of them.  We have enjoyed the school we have crammed in between sports, swim and piano lessons, therapy sessions and life.

 Chess Tournament 2012
Sid the Science Kid 2nd Place
Princess Pea 3rd  Place and she got the Sportsmanship Trophy!

Sid the Science Kid is 9 and currently into baseball after his first year of Wildcat.  He is above average in all his school studies and makes my teaching more difficult in some ways as I try to challenge him but still keep him young.  He is talented in piano and is taking off in his lessons.  He's just one of those kids we all hated in school that was good at almost everything he does.  He is pretty obedient, but a negotiator in all situations.  That's where the brains get him in trouble.  And he has some issues with getting into others personal space and keeping his hands to himself.  But, all around he a great kid.  And he still loves me.  At least for a few more years...

Sid and his Lego creation at the Children's Museum in Indy

Princess Pea is 7 and exactly that, our princess.  She is very obedient and helpful.  She has a little of her mama in her and has the most trouble with compassion and saying sorry to her siblings.  She loves reading and most school.  She is currently into American Girl dolls and has saved up enough money to buy her own this month!  She is also showing some talent in piano and moving through her lessons steadily.  After having a little brainiac to follow, she is following very close behind her brother's footsteps.  I expect a lot of her, almost like another first born, but she takes the pressure well.  She loves Miracle to death and is always holding her and helping me.  And, of all of my children, I see an undeniable love for God in her.  She was baptized last fall and she just loves her devotion time and sees God in everything.  Her Christmas list was split into things she wanted and things she 'needs' last year - Jesus, God and a clean heart.  Melts my heart.
 Princess Pea swinging with Miracle at the park

Angelica Pickles is cute as a button, but rotten to the core!   Oh, she can be oh so sweet....when she wants candy or gum or a special trip or icecream or to play a game or a snack or a friend over or or or or... She is a child who is never satisfied or content.  And when she wants something, she lets the whole neighborhood know.  But, she loves Miracle to death and pretends to do therapy with her all the time.  That is when I see her the softest.  Her and BooBoo have gotten closer over the years and they have that love-hate brother-sister relationship.  Her and Sid have a hate-hate relationship most of the time.  Her and Princess Pea can get along, but more often they are competing with each other.  I wish I knew more ways of softening her, but for now we just survive her fits and move on.  Kindergarten was interesting this year.  She is super bright but not very motivated.  She gets frustrated more easily.  This year will be a challenge, I'm sure.

 Angelica Pickles lost her first tooth this month

BooBoo is still my spoiled little boy.  He is still so sweet for the most part, but with the influence of his older brother and Star Wars, this sweet little boy can quickly turn into a light saber swinging, baseball playing monster some days.  He is also a media junkie.  I don't like the tv and we often go weeks without turning it on for the kids at all.  But, he loves the iPad and iPhone and Angry Birds.  I used to give him my phone a lot to read books while I schooled, or at appointments or whatever.  But, once he discovered Angry Birds, The Tortoise and the Hare just wasn't as appealing anymore.  Disappointing, I know.  Once school starts I will have a strict rule that he has to read or do an educational game half of his iPad time, but for now I just try to avoid him getting a hold of it!  Hoping he will enjoy Starfall. com this school year, or other educational sites for his age.  I have lots of hours to keep him entertained.

BooBoo being the goofball he usually is
BooBoo with cape held together with a pantyliner, complements of my friend Michelle 
(great babysitter, huh?)

Mr. Prince is teaching 3rd grade for the first time this year.  I like teaching the same grade he is and comparing my curricula to his.  ;)  Mine are always better and more advanced.  Hehe.  He was able to play basketball, soccer and baseball this past year.  We decided that we needed out of the house more last year, so we each got involved in a lot. Probably too much, so we are cutting it down for this year.  But, it's good for the both of us.

And then there is me.  School dominates most of my daily and even nightly schedule, but last year I did dance in the same Christian dance troupe as my girls and did Bible Study Fellowship.  BSF was a lot and I couldn't keep up in the spring once all our outside activities had their end of the year bashes.  I loved dancing again after over 17 years of being away from it.  I got my flexibility back, lost 20lbs and just enjoyed myself.  Unfortunately, we can't afford for me to dance again this year.  But, it looks like my church is putting together a performance based dance group for Sunday worship services that I'm going to look into.  That would probably better suit my schedule anyway.  BSF is actually studying Genesis this year too, just like we are in homeschool, but I'm not sure I want to make that commitment again.  We shall see.  For now, I look forward to the few GNOs I get and chatting on the phone when I have a moment.

Me, Angelica Pickles and Princess Pea at the Restored to Glory dance presentation 2012

There is your update!  Probably no one ever needs to know THAT much about my family, but it's a good summary for our family scrapbooks.  Hope to someday browse the blogs I used to frequent and see what everyone else is up to two year later, also!

1 comment:

Rachel "Lanie" said...

Ashley, I ALWAYS enjoy reading you blogs. I do feel exhausted after reading them though! LOL! I don't know how you do WHAT you do...but GOD has given you the strength and determination to get it all done. LOVE hearing the updates on "miracle"! That is what she truly is! I continue to pray for her whenever she crosses my mind! God isn't finished with her yet! Keep running your race! Bless you!
Rachel Hawkins