|
We're having lots of fun this summer and wanted to share the pictures. A month ago, my mom visited while dh was out of town. The kids had their usual lunch date and bookstore trip with DD and loved playing games and pretend with her. I don't know how she stays so fun - I hope I can be that fun as a grandmother! The kids loved their gifts from her - a sweater for P, a Columbia soccer uniform for A (both from Peru where she's been twice this year on medical mission trips) and a princess dress & Peru headband for E. We've also had fun with church friends who have become like a family away from home. We have been so blessed by their friendship and love for the kids.
We've had many quiet mornings with books and pj's. Esther loves snuggling up to anyone reading a book. Who would've thought? Dh just finished reading the story of John Patton with A. He loves missionary stories & we can't wait to read the two that DD gave us. I enjoyed a wonderful birthday with a dinner out and cake with the kids and friends. I am so blessed! But where have the past 10 years gone? I still feel 24 but why does the calendar say 34?
Phoebe's been having so much fun lately. She's developing and growing and happy - what more could we ask for? Not to mention how CUTE she is!!!
Mostly just a picture update this time. Thank you for all the encouragement and kind words I've recieved lately about the blog. I can't express how much your kindness and support means to me!
|
|
We hope eveyone had a special day remembering our founding as a nation and the many blessings we enjoy living here! We started our celebration by making these red, white and blue fruit and yogurt treats with sprinkles! The kids loved making and eating them! A very child-friendly and fun recipe for kids in the kitchen!
Then we watched our town's parade. It was entertaining for all with bands, horses, fire trucks and lots of candy!
Notice how excited dh is to be at the parade?
How about that huge wad of taffy in E's mouth? She didn't catch on that she could actually scoop up the candy on the road until about halfway through and I wasn't about to encourage it. She had her fill though!
What more could a girl need? Horses and princesses to watch, a water bottle and hand fulls of taffy!
Me with my darlin's!
A quick Phoebe update - we received word back about the latest round of genetic testing for common mitochondrial genetic mutations. All normal! We're very happy to hear although it leaves us without much more for which we can test. Next, she will have her 3rd brain MRI with spectroscopy the end of July and an EKG & echocardigram next month. Here's a moment that touched my heart deeply this week - the other day A wanted to give Phoebe her bottle. While he was doing a superb job, I told him he was going to make a wonderful Daddy some day seeing how gentle and loving he is with her. He surprised me with his answer, but it goes to show 1)how children can be so innocent from the world's view of disabilities and 2)how someone's influences can really shape their views. He said, "I really hope I have a child like Phoebe someday........disabled." After wondering how to respond to this, I simply asked "Really, why?" He answered, "Because she's so cute." How refreshing and encouraging to see that he views her as a blessing and not a burden. He is here everyday with us seeing the happy times and the frustrating ones yet he has concluded that she is precious and desirable! What sweet encouragement that moment was to my soul to have one of my greatest hopes realized. I wonder if all the time and attention we give her will make the other kids resentful yet hope they will embrace a deeper understanding of compassion, understanding and ministry to others. Hearing his unsolicited, heartfelt, simple words gave me reassurance that the Lord is using this situation for His glory and our good! |
|
How good the Lord is to hear the prayers of such wayward followers and choose to redeem the ugly and unclean! Just when beginning to feel isolated and misunderstood, I have been flooded with new outlets for understanding,support, and encouragement. The arrival of a new family at our church with 2 miracle babies who were born at 21 and 27 weeks (yes, that was not a typo - she was born at 21 1/2 weeks) who are alive and beautiful today has been a huge blessing to me. A short video of their baby girl's first year can be seen at: http://www.youtube.com/watch?v=2pi5SGRe2_E And the story of Todd (of the Christian singing group Selah) and Angie Smith's baby Audrey who recently went to be with the Lord is moving beyond words. You will spend hours reading her poignant and heartfelt words that reveal their brokenness while serving a loving God who makes broken places whole. You can read her blog here: http://audreycaroline.blogspot.com/ What an amazing God we have been called and redeemed by! On a different note, I also recommend the Voice of the Martyrs monthly newsletter to anyone who wants to be inspired by modern day heroes of the faith. To read true stories of Christians today being persecuted and taking life-and-death risks to share the Gospel changes my perspective of this comfortable and painless life I live. It is such an inspiration to hear these Christian brothers and sisters proclaim from experience that to share in Christ's sufferrings truly is a blessing and a high calling from their glorious Saviour. |
|
It has been an intense time here, but I think that is what life will be like in general for awhile. We had a splash of fun with the visit of my sister and her family from Florida. We had not seen them for a year! It was so good to catch up with her and her husband, laugh and play with our neice and nephew and show them snow for the first time! Yes, in the mountains snow can still be found! And today's 45 degrees sure didn't feel like the brink of summer. Oh well!
On a homeschooling note, we are finished with most subjects and have about a month of math and couple weeks of handwriting. Hopefully we'll do lots of letter writing and journaling this summer to keep practice. I wasn't sure how things would wrap up timewise since I wasn't using a prescheduled packaged curriculum but the timing couldn't have turned out any better! I am glad math will continue throughout most of the summer. It takes so little time, is enjoyable to A and will elimate the major review most children have when school resumes in the Fall. I don't know who learned more - the kids or me? While there were a couple burnout periods and feelings that I wish I could've done more, I am so happy with our first official year of homeschooling! We're on to our summer reading with prizes for reading 15, 30 and 50 books. Maybe I should have upped the numbers since A is very motivated by rewards! In 2 days, he's read 5 books. We had a strange result to a science experiment last week - we planted lima beans in cups and put 3 in the sun and 1 in the dark pantry. The only one blooming after a week is the one in the pantry. We were all quite confused....our results didn't exactly reinforce the concept of plants needing light and water to grow but it was a good time to talk about the scientific method! We are seriously considering whether to homeschool next year or not. It is heart-wrenching because it is the desire of our hearts and think it is the best for them, but with Phoebe's special needs and daily therapy I've been feeling the the other two get less attention and stimulation than they need. It's been an area of prayer and discussion lately. We could use more help with her therapy and house management but have a hard time knowing how that will look and how to administer lots of people coming to the house. In general it's hard to know what our lives should look like now. We've definitely departed from the mainstream family life stereotype with the challenges and dilemmas we face with our little Phoebe. We pray for more families to come into our lives who understand our situation and empathize with its demands. Some days it's hard to know how to face another one. We've had a grueling week with her resisting her therapy, not eating well for us, and trying to schedule more tests and reorder medicine - sounds simple enough, right? Somehow it's not! While I'm so thaknkful the government pays all the bills, they sure can make it complicated sometimes! Could you please pray for us to have discernment, patience, endurance, and peace? Somehow because the common belief that God doesn't give you more than you can handle, many think managing the trials is smooth. Even though we also belief this, what God gives you can be really, really hard to accept, live with and be joyful about. Knowing that it is all for His glory is the one foundational belief that carries me through the rough spells.
|
|
Phoebe was evaluated again by Hope and A Future, the neurodevelopmentalists who write an individualized at-home therapy program for us, and we are busy trying to complete the 35+ activities with her daily. We believe this approach can really benefit her and are optomistic her brain will form the connections to function better as we remain steadfast in the program. This program is much more doable than the first one, as I was always feeling like more was left undone than completed at the end of the day. They say - "Only shoot for completing 50% of the program daily", but I'm the type that unless everything is checked off it's not done! And I'm excited that A & E can help with a couple activities called "waggles" and "deep pressure squeeze". She loves swinging in a towel, astronaut bouncing and burrito wrap. But she could do WITHOUT the face masage, pinch/pull/rub, and deep pressure. And she REALLY DETESTS the "assisted crawling" and "upside down rabbit"! Aren't some of the names interesting? It's so hard to make her do things that make her scream and are tough for her physically but this is our dose of "tough love" in an effort to help her! Being a parent can be so hard sometimes! We attended our first Renaissance Festival last week with our good friends. It was quite an interesting affair with some very child-friendly aspects and others not-so-much. Overall the kids had a blast riding a pony, watching a puppet show, and seeing real medievil costumes like chain mail and armour. The highlight was watching the jousting! Full contact, no holds barred, wooden lances breaking and flying up in the air. No one fell off their horse though......bummer! The kettle corn made up for it though! The kids enjoyed their "public bath" on our first 80+ degree sunny day here. Every day from then on they enjoy giving each other and themselves a "public bath". It's been a new term coined for household use!
Watching a puppet show!
Andrew with the 20 pound helmet that one of the "knights" graciously let him try on.
The kids posing with a jester.
Hear ye hear ye, good bye for now! Kathy
|
|
The cycle of life goes around and around .......Father and son at a soccer game. It was a mere 28 or so years ago that Daddy was lacing up those soccer cleats for the first time to play his first match. Next week will wrap up our son's first season playing Daddy's beloved game. It was fun Fall and Spring seasons watching the boys grow, improve and learn teamwork. Greg did an awesome job coaching - teaching the kids to pass more, how to dribble, good sportsmanship and mainly just to have fun.
Andrew had some great action last Saturday on a beautiful May morning.
GOOOOOOOOOAAAAAAAAAAAAAAALLLLLLLLLLLLLLL! From the newest soccer mom, K |
|
With great anticipation, we have finally welcomed the arrival of Spring to this Artic tundra (or so it felt to this Southern gal)! Andrew throught he was helping the flowers bloom last week by peeling the petals off of about 5-6 unopen tulips!
We have traveled around the world visiting a country in each continent ending with Antartica. There were so many more fun ideas and books about this snowy abyss than I expected. We had a blast learning about penguins, whales, explorers and icebergs. Here we're recreating the action of an icebreaker ship:
While doing some therapy with Phoebe I looked up and saw A & E walking their little family down the sidewalk. Andrew was pushing their 2 year old and Esther was holding the 1 year old. I love their imaginations! Pretending together is what they do best! Later A said he really wished he could marry his sister because she is going to be such a good mommy.
|
Oh well - what can you do after it's already happened and he really thought he was helping!? Here are some of the tulips left to themselves. 
|
I guess my spirits were overly optimistic today because I attempted a feat no short of hiking Everest or completing an Ironman triatholon for me.........taking my three children to the shopping mall. We had already made stops at the pharmacy, dry cleaners, teacher supply store and Blockbuster, so we were all beginning to wilt. However I really wanted to pick up some gifts for A & E's AWANA leaders for tomorrow night's final AWANA. I thought it would tip the scales in my favor to get them frozen yogurt cones at the food court to start off, but this tactic backfired in store #2. We did our lotion and soap shopping and after E finished sampling all the scents on her little wrist we made our purchases. All was going well until the cashier who was extremely friendly up until now pointed out that my little "pip" (as she called her) was trying to swipe a lipgloss. I was mortified and apologized and made my exit as quickly as possible. At store #2 which was a kiosk in the middle of the mall, I was trying on a silver chain and felt E tugging at my sweater. To my dismay, when I looked down she was dripping with chocolate frozen yogurt - on her face, shirt, pants, shoes, socks and the floor. I guess the last bite didn't go well. The saleslady handed me mounds of paper towels and together with my wipes I cleaned up the mess. I should have left now! I am a fool! I decided to investigate some sandals that caught my eye so we went into a shoe store. While I quickly scanned styles and prices, E wiggled her way between a shoe rack and a bench to look at some "church Crocs" (as she called them - they were Croc mary janes). She's an expert at locating and exploring places she doesn't belong. The salesman told me quite seriously to remove her so she wouldn't get her eye poked out by the protruding shoe racks. OK - I'm feeling like a negligent mom ..............and I'm starting to realize that my problem may not be with all three children since I'm seeing a reoccurring pattern as I type this. There were some last funnies on our way out the door but these were the highlights. I remember why I don't go shopping with three children! If you do, how do you do it? For supper tonight I was excited about making "saucy little meatballs". When dh is away we usually keep meals really simple, but the children were playing so well and I had the time and inclination to attempt this new healthy recipe with ground turkey, onion, bread crumbs, spices, lemon peel, etc. We all tried it together and coughed it up in chorus. I'm so glad now I didn't subject dh to it. I am trying dilligently to find healthier recipes for us, but so far all have been a 0 in the taste department. I've never thrown away an entire meal before but I did tonight. When I told A I was just too tired to make another meal and thought we'd just have to suffer through it, he offerred to make pb&j sandwhiches. It was the 1st time he did it all himself so I had to grab the camera. It was cute seeing him slather it all on. And when he received praise for his efforts, E decided she must not be undone and decides to refill the napkin basket with double what it possibly can hold. It was hilarious watching her stuff them in - again, a camera moment just to remember it all!
Lastly, E got a new bike last week - my best bargain find ever for $4! With a washing, some green slime in the tire to patch a hole and some air, it makes her the happiest girl on the block.
|
|
To add a some cheer to your day from our little ray of sunshine:
Phoebe's had a great week and shown small signs of development. We had appointments with her neurologist and opthomologist who both were happy with her hearing improvement and controlled seizures. We will try and wean her off one of the seizure meds (Keppra) and see how she does. We'd rather her just be on one med if it can do the job. Although I asked a ton of questions, there is no new information to report to you. We received the names of 2 pediatric neuro-opthomologists in the country who we may pursue. We will also get a second opinion from the senior partner in the opthomology practice at our dr's blessing. He is hopeful and believes we will see improvement in her function and vision over time. Her neurologist thinks her overall diagnosis is genetic in nature. We will see the head of the genetics dept at the Children's Hospital next month for a 2nd opinion. No doubt though the prayers of all of you are heard and may be playing a part in her progression. Thank you .....keep praying! It's so sweet to hear Esther pray every day for Phoebe to "walk, talk, crawl, do a cartwheel and a summersault" .
Little Phoebe loves the animation and excitement of Daddy (and Hungry Hungry Hippo)
So what do you do on a beautiful Saturday afternoon when the kids say they're bored and Mommy and Daddy are both doing things? Give them paint, glitter, sparkly things, glue and a homemade car Daddy assembled in 2 minutes and let them at it! They had fun for hours and we ended up with some sparkly painted rocks in our front flower bed also!
Our new addition to the front porch - we finally got the flag up and it looked so nice waving on this sunny blue day. We are so thankful for our great country and the blessings we have! Have a restful Lord's Day! Kathy |
|
I was going to call this post "Our new toy" but this thing is too big and deserves to be in the "furniture" category!! We brought home a new piece of equipment called a stander for Phoebe to spend 30-60 minutes/day in to strengthen her legs and increase the chances that her hips will develop properly. There are so many things to praise the Lord for so I'll list a few: 1. Instead of waiting for insurance to approve our request and having to choose one from an entire catalog, our PT received one from a family who is done using theirs and wanting to donate it to Rehab for a family like us to use for 6-12 months. With all the time I spend administering insurance for her, this was a HUGE relief not to have to endure the process another time. And it's a top of the line stander worth over $3K! 2. She had hip x-rays last week which turned out completely normal so far. It's so amazing with all her delays that some of the test results which are normal or improving really stump all the doctors. Divine intervention? With God anything is possible! 3. Her hearing is improving! Her impairment is considered mild now and half the frequencies tested are in the normal range. She had another ABR Tuesday (Auditory Brainstem Response) which is a fancy name for a hearing test done under sedation where the outer and middle ear are bypassed to discover how the signal travels from her inner ear to her brain. All the other tests done for bone conduction, conduction time, and tympanogram were normal! We are so happy! 4. Seizures still under control - going on now 4 months! 5. She's playing cause and effect games with us like peek-a-boo and seems to be improving in her cognitive development. Here she is in her stander:
This photo is to make my mom and grandmother smile! This sweater was knit by my grandmother for me!
|
|
OLE! This was one of our favorite countries to learn about! We spent March learning Spanish words, reading Mexican missionary stories and the Spanish version of Cinderella, making homemade tortillas and flan, playing the oldest team sport originating with the Mayans, and making maracas. To top it off we had a Mexico party and invited our friends! What a bummer that the camera was set incorrectly and all my pictures were botched! Muy mala! But I did get one of A, E, and their good friend in her flamenco dress before the party was over. We sung Spanish songs, did the Mexican hat dance, made pinatas and, of course, ate lots of Mexican food! We wish you could have been there, DD!
Esther rolling out flour tortillas......and being very silly.
Now we're off to Antartica.......hmmmm, does anyone have any ideas for April Antartica month?
|
|
Today was a special day for our family as our 2 daughters were baptized and we became members of our church. Below is our family with our wonderful pastor. We celebrated with some church friends afterwards at a luncheon. We're so thankful for our little church oasis in this spiritual desert that refreshes our souls and provides such loving fellowship.
Other March happenings - Swim lessons! While the days in March alternated between warm sun and wintery mix, we donned our suits for swim lessons (in an indoor pool)! A and E had great fun and are slowly increasing their water skills. Swim lessons are over and soccer starts next Satuday!
How the rest of us enjoyed swim lessons "under the bubble":
Tomorrow is the grand finale of our Mexico month for our world studies. We're having a Mexico party. Hopefully I'll have more to post soon. Adios! |
|
BLANKIE!! A couple weeks ago, our son experienced a traumatic time when the cherished blankie that's been at his side at night for the past 6 years of his life was believed to be eaten by our dog! Brady, our 9 year old yellow lab makes himself comfy on A's bottom bunk where A threw blankie as we were heading out to the park. As he put it, "I threw it an inch from his mouth". After searching for days we concluded blankie was gone forever in Brady's digestive tract! It was the roughest 4-5 days of A's life. He had trouble sleeping, scowled every time he looked at Brady and just was not himself! This story has a The day finally came this month when I stepped aside and let Daddy and A do what they've been wanting to for years .... give A a "Daddy" haircut. Dh cuts his own hair with clippers so A went "under the clippers" to chop off all that thick brown hair! It was a fun time for them as, behind closed doors, I heard the buzzing and humming of the clippers. I wasn't allowed to peek until it was finished. With his new haircut and first tooth that he lost recently, my little guy is GROWING UP!!
We've enjoyed fun times with our great homeschooling friends this month. We had a zoo day and play days at home. Here are some of the photos:
I love how we get to involve kids of different ages in learning together. Here one of our friends is reading to A, E and her brother - don't they all look entralled? I LOVE IT!
My life seems to suceed more on a schedule, however it's refreshing to lay aside the routine for spontaneous family times. Friday was oneof those mornings when A and E decided after breakfast to pretend "church" - A was the pastor and E was the Momma with the bunches of children sitting in the pew. What a neat time for me to watch them unfold this drama of the pastor preaching and then baptizing the Momma and one of her babies. Then I was cast to be a Mormon who didn't know she was in a Christian church and ask lots of questions about the Gospel. Now that was all worth putting off spelling and math, don't you think?
Phoebe's been doing lots of great stuff lately - here she shows off her push-ups. We're so happy how her arms have been getting stronger and she's pushing herself up into a sitting position all the time. A long awaited day came today when I walked into her nursery and saw her sitting up after her nap! She is such a trooper!
|
ending when A found BLANKIE in the bottom of a toy bin! What a day of rejoicing that was!! 
|
A movie my dh and I watched last night inspired me to think about the idea of life being more about the journey than the destination. While the movie had some philosophies with which we disagreed, there were some nuggets of wisdom worth pondering. Here was the scene: the young man desperate to find truth and the way to happiness takes a long hike up a mountain with his mentor as a "training exercise" . When they reached the summit, the young man asks, "so what did you bring me up here to see?" The wise mentor looked down and picked out an obscure rock from beside the young man's foot. "That rock is what you brought me up here to see????" he asked rather displeased. The clincher was the older man asking "Would you not have come if you knew this was all there was at the top?", which was ironic since there was extraordinary beauty all around. The point we got from this illustration was that by focusing our thoughts, emotions and even our perception of what makes us happy on the end result, we miss out on SO much beauty, joy and what God has for us right now. Our situation with Phobe came to mind. How often I think that we will all be truly happy when she crawls, or talks or eats by herself or drinks from a cup or her seizures stop, you name it. I don't intentionally think this way but honestly I do. This thinking creeps in to so many areas of life. Marriage is another area I realized this faulty philosophy has tainted God's truth in my mind. How many of us have thought that our marriage will REALLY be happy WHEN my husband just tells me he loves me more, takes me out on romantic dates more, or whatever the problem du jour is gets fixed. Here's another area - self talk. The idea that I will be so happy when I lose 10 pounds, when my kids perform to the level of my expectations, when I can finally find the hair style that doesn't make me look like a 7th grader, etc. Do you get the point? There are so many ways I realized that I tell myself that I will be happy WHEN........ How much am I missing out by not living in the here and now!?!?! If you're like most parents, you probably focus alot on your children's faults and areas you want to help improve. As a homeschooling parent, it's easy to fall into this trap as you constantly evaluate your children's performance and strive for higher expectations. While there are applications for me with my 6 and 3 year olds, my temptation to this thinking is which our 18 month old with "special needs". I realized how much time I think guilty thoughts and feel defeated because I didn't get enough therapy done or she is regressing in "this area or that" or it doesn't seem like anything will ever "click". How foolish I am! There is so much she can do! She laughs, she smiles the most beautiful smile, she loves socailizing with others, epecially babies and small children, she's learning at her own little pace, and she makes us laugh daily. And I am missing all these joys by getting stuck in the "I'll be happy when...." mentality. So how does such a change happen? Well, according to the movie, you have to "take out the trash" in your mind. I guess that is what Paul was talking about when he said in Philippians 4:8 "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." Being intentional in my thoughts and focusing on the true, excellent, praiseworthy, pure, noble and admirable is one of the biggest challenges for me. For thoughts determine feelings which determine actions. I need much more to master my thoughts than the cellulite I am obsessed with eradicating! The arena of one's thought life often gets ignored for it is so abstract and invisible to others. In prayer and by God's grace I am setting out to "live for today", better train my mind and live each minute for what it is - another opportunity to be a vessel of God's grace and love. |
|
....THE FLU!! And to make matters worse both Mom and Dad have been hit equally as hard at the SAME TIME! This isn't supposed to happen!?! The girls have escaped it so far - praise the Lord! E(3) has been running the family, I think! She brings me juice in the morning and entertains P(1) all day. I think she'd cook if I let her. And her humor keeps us all smiling - she sings a Cubbie song that is so cute and has coined a new term, "Greenwalls", for "Walgreens" where she went with Greg to pick up our meds. My dh and I have never felt this sick in our lives. I feel more run-down than post-childbirth! We've established a tag-team system so we alternate sleeping, and the kids have been watching a lot of home movies to pass the time. On a brighter note, before A(6), Greg and I came down with this, I've watched A(6) and E(3) become closer pals lately.
It's so precious to see your children loving and serving each other. Recently, E(3) requested A(6) do her preschool workbook with her. He sounded just like me guiding her and praising her efforts!
And when I had a bedtime sans Daddy a couple weeks ago, A(6) insisted he could put E(3) to bed while I put the baby to bed. I thought that this could be a real bonding experience and at worst a stall tactic, so we gave it a whirl. I snapped this photo without them looking of A(6) reading the bedtime Bible story to his sister after getting her jammies on, helping her brush her teeth and even an episode of him getting frustrated because "she just won't listen to me". I chuckled under my breath.
Another funny story involved the family gym where I've gone a couple times a week to exercise while the kids play in an enclosed area where parents can supervise. I didn't realize how much security they found in each other until they didn't leave each other's side the first few times we went. When another little girl approached A(6) to hug him, E(3) gave her the body block as if to say "Hands off girl, he's mine". And here's some shots of all the snow we're still getting. It comes almost every other day. There are piles in our yard 4-5 feet. We've transitioned from the magical wonder of waking up to an exciting new snowfall to the reality of shoveling and breaking up ice almost daily. It still does look pretty when it first falls though!
We celebrated A's and dh's birthdays pretty quietly this year the past few weeks. Here's A(6) at his first attempt on the climbing wall. He didn't make it all the way to the top but he's not done trying yet. To show his support, Daddy tried it too!
|
|
That's what life with Phoebe (17 months) feels like. We all keep plugging along slowly but surely with the physical, occupational, vision & hearing therapies. We also perform a couple daily sessions of therapy from a home based program designed for her by Hope And A Future, a nuerodevelopmental group based locally. We really agree with their approach and general motto - function determines structure (instead of vice versa). In other words, performing the same activities for the appropriate duration, frequency and intensity can create the necessary nueropathways which can change brain structure. Mainstream therapy doesn't take a strong stance this direction because studies haven't shown this effect yet. However, these nuerodevelopmentalists have SEEN changes in so many kids who use their uniquely designed programs that studies wouldn't validate anything for them. Their thought is that traditional therapy is just a little behind in what they have known for a long time. I like having both traditional therapies and this nuerodevelopmental approach to get the best of both worlds. It is quite overwhelming sometimes since you only have so many hours in a day to incorporate these activites into your day and you must decide what you think will be most effective. Phoebe has not shown a huge spike in development using all these therapies but rather slow and steady progress. It's easy for me to fall into the trap of believeing that there is the ONE thing/approach/toy/exercise that will make her catch up in development & I just have to find it. What I've accepted over the past 6 months is that is probably not the case - we just need to keep chugging along (like the tortoise) with our eyes fixed on our goals, provide her with all the oppotunities we can and keep praying. We pray for God's total healing for her but fully realize His answer may be different. We do not want to be afraid though of praying for big things to happen - for we serve a big God capable of bigger things than we can comprehend! So what''s going on with little Phoebe? Here's a little summary.......She started wearing hearing aides a few weeks ago. She tolerates them wonderfully and hardly ever yanks on them. We're not sure if they're improving her hearing because there's not an objective test to quantify it, but behaviorally she has been more pleasant, she vocalizes more and she is a little more attentive. To back up, we discovered in October she has a moderate bilateral cortical hearing loss (meaning both ears and stemming from the brain). We will repeat the ABR (hearing test under sedation) next week to check for consistency and any improvement. Since the hearing aides have shown no negative effects we will continue using them to watch for signs like language forming or understanding one step commands (wave bye, give me a kiss, etc). Currently she makes many different pitch sounds but no babbling or words. We continue to patch her one eye for an hour a day and think her eyes are improving. I don't notice any strabisus anymore and am so glad we kept trying the patching before going ahead with eye muscle surgery. She does turn her head in one direction regularly which hints that one eye is stronger. The area on which we work most with her is her sensory processing disorder. According to her OT, she has motor planning dysfunction, meaning her brain cannot figure out how to do things that normally developing children learn how to do (crawling, using a spoon, drinking from a cup, playing with toys, clapping, waving). We spend lots of time repeating the same tasks with her & talking with her about what she is doing, patterning exercises which include moving her arms and legs in a crawling motion on her stomach and back, giving her tactile and oral stimulation which she seems to require at a more frequent and intense level to register nuerologically. With her cortical visual & hearing impairments, sensory processing disorder and hypotonia, all roads lead to a brain injury (in our opinion). No doctor has diagnosed this however because no evidence has been found on brain scans. We will repeat an MRI this Spring/Summer. The geneticist was baffled by her, saying if she has a genetic disoder it is rare and complex. At least a dozen genetic tests have been performed, all coming back normal. The plan is to wait 6-12 months and return to her to discuss any further clues that could pinpoint a genetic disorder. The encourgaing news is that cortical (brain) issues leave immense potential for improvement with time and therapy. A huge milestone for her was sitting up on her own from lying down today! I was so suprised because, while I was only a couple feet away, I had my back turned and didn't see it. There was no one else in the room so it had to be her! Whew - a lengthy explanation! We've adapted to our new routine with her & the doctors appointments have decreased so we're thankful for more time to spend at home. She hasn't had a seizure in 2 months and think that is playing a role in her developmental improvements! One recent joy has been her addiction to her siblings. Her interest, smiles and laughter at their silly ways is priceless and probably helping her more than all these therapies!
|
|
Well, we're getting another 3+ inches of snow this morning. That adds to the foot of snow we already had from the past several weeks. It's almost blinding to look outside-it is so white! It's so powdery and light you can't even make good snow balls with it. Aparently we're getting much more snow than anyone remembers around here. The snow hasn't made anyone here blink an eye - nothing closes or even slows down a bit. It's so different from the South where 1 inch will close schools and delay everything for days. I'm so thankful we've not had any trouble driving or getting stuck. When I hear my neighbors scraping off their cars and shoveling their driveways first thing inthe morning to take their kids to school, I am so thankful we don't have to go anywhere to have school. On the other hand, we do get a bit stir crazy sometimes and the walls seem to close in around us. I'm thankful A & E enjoy playing in the snow. A could stay out there for hours with his neighborhood friends. E enjoys about 1/2 hour and then comes in calling for hot cocoa! As far as schoolwork go, we've slowed our pace from Fall and hit a bit of burnout. I heard this happens to most families so it's not really discouraging. It's made me utilize one of the benefits of homeschooling which is the flexibility to switch gears and mix it up. I plan on incorporating all our subjects into more of a unit study. Anyone have any good ideas for a month long unit study? I really want to focus more on having fun and being hands on. I never thought I'd become a workbook hoemschooler but how easily in 6 month that has happened. They're easy, require little planning, and you feel confident that the kids are getting "everything they need". But for the younger ages, they really take the FUN out of learning and have made mine dread "school". So my challenge (and I love a challenge) is to give 'em school without even realizing it for the next few weeks! And my dear friend who visited us from NC reminded me that character is really the most foudational educational concept we want our kids to learn. As she put it "What good is spelling and math if you have terrible character?" So I plan on spending more time on this too - how the kids play together, how they treat me and Daddy, how they approach their work and how they win/lose gracoiusly. In the middle of the month my grandmother came for an extended visit. Woah can she cook...and do laundry....and clean......and iron.....and watch the kids.....and all at 80 years young! We are SO thankful for her help and the walk down memory lane with all her childhood stories from the coal mining town she grew up in. Y'all come again soon!
Esther was fascinated by Grammy's cross stitching. She'd give her the bag & ask her to do it!
Grammy with three of her great-grandchildren.
Grammy whipping up some homeade dumplings for chicken pot pie!
Donna, Andrew, Esther and I in front of the Mormon temple in Salt Lake City
Donna, Esther and I at the visitor's center in Temple Square. You should have seen the look on the "sister's" face when she was complimenting the kids and asked which one of us was the mom and Greg replied that we were both his wives. As many of you know Mormonism once condoned polygamy and a small fundamental group stil does in Southern Utah. Her quick reply was "Are you a part of the LDS church?" Without answering that question yet, he asked if it'd be OK if we were both his wives. They he confessed he was joking and that we were in a church, just not the LDS church. She was red-faced by this point and quite flustered not exactly knowing what to say. My next post will be an update on Phoebe's health! Off to shoveling! Warmest wishes, Kathy
|
|
Here's Christmas day with our children the past three years!
We welcomed my brother in early December for his first visit to the snowy white country but unfortunately the mountains he came to see were completely covered in clouds the ENTIRE time he was here!
My parents joined us for a white Christmas. My mom came early to help around the house because I pulled a muscle in my back the weekend before. She was a great help and the older two each enjoyed their "lunch with DD". We even managed to pull off a German meal since this is "Germany month". The girls loved getting their horses - Rody and Lightning!
Esther enjoying one of her favorite pasttimes (painting fingernails) - and for the first time she gets to do it to a willing soul - my mom!
Making German spaetzle - like the cook's outfit? She comes up with this stuff all herself!
This picture is especially precious to me because it reminds me of the loving heart of another child - our son. He spent almost all his AWANA store points to get his sister this costume because he knew "she'd like it and she likes pink". I was so thankful for his thoughtfulness and giving spirit!
|
Guess you'll just have to come again! The kids loved playing in the snow with him and wrestling on the floor! We have such fun uncles! 
|
Wake Forest beats Ohio State 2-1 to become National College Soccer Champions!
|
|
This is a little belated, but November was China month for our homeschool. We joined forces with several other homeschool families for a fun afternoon "Trip to China". We sailed off in a huge cardboard boat with our passports and boarding passes, learned about the food, people, history, medicine, geography and even tai chi. One of my favorite memories of the day was watching the kids involvement in the interactive parts - the crafts, using chop sticks to eat rice, and practicing tai chi. Especially entertaining was my daughter who, instead of following the tai chi instructor, decided to gather all the girl's flip flops and take them to the far side of the gym to try them all on. Where does she get these ideas? She follows the beat of her own drum, I tell ya!
This month is Germany where we're learning about castles how Christmas is celebrated & some famous composers. I'll include more pictures of Germany at the end of the month. Now that we're approaching the half-way mark of the "school year", I've thought about our progress and decided I LOVE HOMESCHOOLING!! It's not always easy and I've been challenged at times in staying focused but it's so worth it! Last week while I cleaned the kitchen after breakfast, instead of rushing out the door to take the kids to schools, I watched my kindergartner read to his sisters before we even started his coursework.
I love how homeschooling gives time to learn how to serve and love others. I love being able to direct and oversee the teaching and learning. I love being able to tailor the education to the child. I got a dose of reality from my 3 year old when I was trying to do my first worksheet with her last week. Completely uninterested and squirmy, she informed me as I was asking her what the last shape on the page was that I was "interrupting her". I know already she's going to require a different kind of experience than our son. I love a challenge though and know home is the best place for her!
We love making shapes, treehouses & forts with toothpicks and marshmellows. My oldest said he "could just do that all day"! Getting to eat a few makes it even more fun!
Who needs expensive toys when you can play with boxes? Don't boxes rank on the top of kid's play things? Esther got this beautiful horse from her grandparents, and the kids played with the box for the entire first hour! She does love the horse though and named it the Black Stallion.
|
