Thursday, April 29, 2010

Adventures with the Klan

For those of you visiting my site for the first time, I thought I would introduce the Klan....

I am a stay-at-home-mother of five beautiful children. I have an education degree and plan to homeschool my children through graduation. I love to sew, crochet, knit and scrapbook, though with five kids it's hard to find time for my hobbies! Someday I would love to be a foster parent and an adoptive mom, too.

The Klan Leader is Mr. Prince. He is a 2nd grade teacher at a inner-city elementary school. He enjoys soccer, softball and street basketball and is an incredible father to the Klan.

Sid the Science Kid is my 7-year-old genius. He is obsessed with the solar system and the human body, loves soccer, enjoys being involved in Junior Bible Quiz and piano lessons, and will be entering the 3nd grade at Kellogg Academy this fall.

Princess Pea is my prissy little 5-year-old. She loves her ballet classes and says she wants to teach dance when she's older. Her other loves are drawing and reading. She will be starting first grade this coming fall.

Angelica Pickles is my spunky 4-year-old. She has loved babies since she was a baby herself and her favored doll is her beloved Asian doll, "Baby Tui". She has never been afraid to stand up to her siblings and often times is the leader of the pack, mostly by force. Force meaning "loud scream". She can be quite sweet, but still often shows her out-of-control-three-year-old stage.

Boo Boo is just 2-years-old. He is a very laid back baby and enjoys being the clown of the klan. All of his siblings adore him. His loves are balls, penguins, giraffes, and cars. He just 'goes with the flow' with a smile on his face.

Miracle Myra is the baby of the clan, just 7 months old. She's had a rough 7 months, but is progressing and we are still seeing many miracles in her life. She was asphyxiated at birth when her heart rate dropped and has since been diagnosed with microcephaly, epilepsy, cerebral palsy and cortical visual impairment. She is also very laid back and a very happy baby. She is our little miracle and we are so happy to have her.

Well, there is the formal introduction of the Klan and it's Leader. Hope you enjoy the Adventures!

Tuesday, April 27, 2010

Myra's Summer Wardrobe

We hit a Carter's store when we visited Indy last week. We don't have one around here. I had fun emotional-shopping after our meeting with the specialists!

Myra is going to be my hat girl. Not only do I like dressing her up more than my other girls because it's easier, (I used to think tights and dresses and hats were just a pain when a child was sitting up and crawling) but it also makes her small head less noticeable. I'm not quite ready to explain to everyone I run into about Myra's history. And I am stopped A LOT just because I have five little ducks in a row following me. So, here is the newest addition to her hat collection. I'm going to like bonnets better on her than sunhats because she will be lying down on her back most of the time. So sweet!

Most of these outfits are swappable...

My boys lived in these little one-piece jumpers.
I wish they made more that weren't dresses for little girls.
Love the monkey and skirt!

Loving these dresses! I still want to make some,
but some store bought stuff you just can't replicate!

There ya go, Myra's new wardrobe....

Thursday, April 15, 2010

Specialists, Labels and Milestones

I've been somewhat dreading this blog post...

Mostly because I haven't yet sorted out my own feelings, let alone having to think of everyone else's reactions to what I might share. I'm sure those of you who have read my blog know I'm a pretty detailed person, and you might get bits of information here and there from the sea of information that I type. But, there have been so many details given since last September, that I'm sure even Mr. Prince couldn't retell them like I could. But, that's me. There have been a number of times I've been sitting with a doctor in the last few months and have been asked if I have a medical background. No, but it seems to be I am getting a crash course in neurology, therapy, anatomy, etc! But, as people read and then talk to me, I see the small bits of information they hold onto, knowing many of them probably don't read all my posts. What I don't want anyone to do after reading this post is click away from this screen seeing myself or my daughter as I suspect most might. As a label. As someone to be pitied. As a tragedy. And remembering just a few words I mention. I know many still will, but I wanted to just say up front that God is not done with Myra, and no matter what label they place on her or box they fit her into, I know God has the ultimate say and all these experiences are purposeful in His Perfect Will.

Mr. Prince and I took Myra to see a Developmental Specialist and Neurologist at Riley Children's Hosptial this past week. We were hoping to gain more information about Myra's future and more explanation about Myra's current condition and development. We have not been happy with our neurologist here, and with Myra's vision impairments, I think even her therapists and pediatrician are at a loss in helping us teach and work with her to some extent. Sometimes I feel like I'm the only person in this state that has a daughter with a brain injury and visual impairments based on the lack on experience and knowledge these "specialists," and even certain organizations centered around these issues, have. It really is frustrating.....and sad. I know I'm not the only mom searching for answers.....

So, to make a long story short, we missed our neurologist appointment at 8am. We had 1.5 hr drive, left late and then arrived at the wrong was lovely (hear the sarcasm?) So, we ended up waiting almost 2 hrs for our Developmental Specialist appointment. But, it proved to be a good meeting, despite what I might say about the doctor.

I'll call him Mr. Anxiety.

I really did like him, but he definitely had some interesting mannerisms. Mr. Anxiety gave us a lot of information about brain injuries, typical outcomes, treatment options, and so on. He spent lots of time with us, answered all our questions and was very detailed and knowledgeable. I definitely would trust Myra's care to him. But, he was also a little anxious and maybe somewhat aggressive in his approach. After a brief examination of Myra, he mentioned hand splints to keep her hands open. Yes, often times children with Myra's background have clenched fists, but 97% of the time (and when you aren't messing with her) Myra's hands are not clenched. So, splints are not necessary in my opinion. (And my physical therapist would agree.) Also, after seeing some of Myra's "tics" and her new "episode" he got very forceful and said, "What neurologist where you supposed to see today? See needs to see a neurologist TODAY!" He went on to mention the worse form of infantile epilepsy (West Syndrome/Infantile Spasms), of which I had researched extensively, and I did not think that is what she was displaying. But, I did agree she needed to be seen asap. He found a neuro who was willing to see her immediate and sent us on our way with a future swallow test to be done (to make sure she's not silently aspirating), a warning to stop feeding her baby food (of which I decided to NOT stop), and a follow up appointment in 3 months. All in all I like him and look forward to gaining more information from him. But, I do think we'll have to have some discretion and not jump to do everything he might suggested. He seemed to put her in a little box before we even arrived based on what a piece of paper said. A fear I have that everyone will do once they hear it themselves...

Cerebral Palsy.

Myra has been diagnosed with cerebral palsy. She was actually diagnosis at 4 months old in January by our neuro here in Fort Wayne, but we found out reading it on our exit paperwork at the office. Not a great way to get information like that. At the time we just ignored it, saying you can't actually diagnose a child with CP until they are two, which is what we had been told. But now, understanding the term better, we know it's just a description of how her brain is communicating with her muscles. Myra has weak muscles in her trunk/neck and tight muscles in her arms/legs. It's a description of how her brain is operating, it's not who she is.

Dr. Anxiety seemed to assume Myra will have all the same challenges many children with severe cerebral palsy have without considering she might be doing "better than expected" in some areas. Very irritating to me, but probably not uncommon. Another thing, and certainly not the last, that I'll have to let roll off my back...

We met with Dr. Calm, the neuologist, next. He never mentioned Infantile Spasms, but definitely thought the new "episodes" she had been having for three weeks were partial seizures, and also thought all of her "tics" and twitches were also seizures. We had been told after a 3 hour video EEG in March that these were NOT seizures by our old neuro, so it was very upsetting that these could still be considered seizure activity. Some have been going on for over 4 months now and this could mean she could be seizing over 100 times a day! He couldn't explain why the EEG would be wrong and also couldn't prove that they were seizures without another EEG. So, he just said that seizure or not, sometimes a change in medicine is a good thing. So, we discussed medication options and settled on adding Trileptal to her current Pheobarbital, in hopes we can wean her off the Phenobarbital soon. Unfortunately we won't see results for 3-4 weeks...

Poor Myra cried all the way home. We stoppped several times, succeeded in calming her, but as soon as her back touched the car seat, she started wailing again. Such a bummer because she did so well on my two other longer drives last week and did great on the way there, too. Unfortunately I think Indy is going to be a regular "vacation" spot for the next number of years.... We are hoping Myra will cooperate more often than not.

Dr. Anxiety talked about a great Cerebral Palsy clinic at Riley, mentioned wheelchairs and feeding tubes, walkers and therapies, talked about possibly not being able to nurse Myra was all a little overwhelming. Cerebral palsy, microcephaly (small head), epilepsy, cortical visual impairment (visual impairment due to brain damage)....the labels are stacking up. Can God still be glorified in the midst of labels and challenges? I know He can.

And one such glorification....

Myra had a new milestone in the midst of all this overwhelming news! She played with her first toy! I bought some new Discovery Toy items for her and she looooves her octopus! It has a crinkle collar and she purposefully moved her right hand over and over to make the crinkle sound. It seemed much harder for her to use her left arm (something I've never noticed before) but nonetheless she touched the crinkle with both hands multiple times. I have a video, but I can never get them to upload on Blogger. But, here are some pictures!

She was very excited...

SUPER excited in this photo!

Both hands...
She even sucked on it....another first!
Another toy I purchased...musical instruments...

Loves these, too....Can you tell?

I have always said to myself that even if Myra is 6 months behind on all her milestones, it doesn't matter. It just matters than she hits them. But, my thoughts have changed a little. Of course I am praying and working with Myra to hit her milestones (and assuming she will get there and amaze everyone who knows her story!), but I now have other more important things to consider. Sight over blindness. Thank you, Lord! Cognitive abilities over mobility, if I should have to choose. Please bless her, God! What gives a child real quality of life? I still don't know the answer to that exactly, but I think I'm on a path to find out. One day at at time. One miracle to behold at a time...

No matter what, Myra will always be our miracle. God has proven his love to us over and over in the last seven months. And I have a feeling He has great plans to show us a love that many people don't get an opportunity to see on this earth. I think we'll need the constant affirmation, too.

And the moments I cherish most right now are when I hold my baby close and she nurses contently. When she's in the arms of her siblings and they see nothing but a new sister, a perfect sister. When the prayers at the dinner table for healing suggest the only answer could be "yes." When Myra smiles. I'm getting the impression these could possibly be some of the easiest months for a long time. I'm going to enjoy them and not look at what isn't there, but enjoy everything that is. Blessings... joy... love....

Boo Boo and Miracle Myra

Princess Pea and Myra have a very special connection

Sunday, April 4, 2010

Boo Boo is Two and Jesus Has Risen for You!!!

April 4th.....My baby boy is TWO! Unbelievable!! This one is hard for me because I've always treated Boo Boo like a baby, he's super laid back and sweet, and the boy gets away with EVERYTHING (because of the first two things I mentioned)! Boo Boo has the best little personality. I love squeezing him all day long....and he lets me!

Boo Boo was my first homebirth and I think I feel very connected to him because of that. He was also the first child I did babywearing with as an infant (I found out about the sling when Angelica Pickles was around one). And he was in the sling or wrap all.the.time. So, mix that with the sweetest boy ever and you get a strict disciplinarian Mom turned into a mushy Mama!! I love my Boo Boo!

Boo Boo is a smart little kid. I was starting to teach him his colors and I started with red. I had him get me a red block over and over. A few weeks later I asked him to get me a red block and he picked up a yellow one and said "Blue!" I didn't even know he knew that was a color!

"No, that's yellow. Go get me a red block."

He picked up a blue one and says, "Yellow!" How in the world did he know that color word, too??

"No, that's blue. Go get me a reeeeed block."

He picks up a plain colored block and says, "Blue!"

I just laughed. A few minutes later I hear, "Mama, look!" I turned around and he had three red blocks stacked up with a huge smile on his face. Coincidence? Possible, but that's also something Boo Boo would do. He's a jokester. He loves to make people laugh by dancing or being silly. He loves to sing "Tomorrow" from Annie and when he sees Mickey Mouse he always says, "Oh, Toodles!" His favorite animals are penguins and giraffes.....not exactly sure why, but as a 6 month old baby he would put up a bunch of animals on this rotating toy, and as it spun he only knocked down the penguins. And after he learned the sign for giraffe, he would find them anywhere. I remember being at little friend's birthday party before he was one year old and he was signing giraffe over and over. Mr. Prince and I couldn't find a giraffe anywhere and just smiled to agree with him. I think he knew we didn't notice it, and finally at the end of the night as I was leaving I saw this tall wooden giraffe figure that had been clear across the room. I couldn't believe he could see it from that far away and notice it was a giraffe. He also loves balls and could roll a ball back and forth at 5 months old and could play catch really well before a year. He still love playing catch, basketball or soccer. And he loves skipping around playing ballet with the girls, too. He gets along with all the kids and everyone adores him. He really is the "angel child" just like his Daddy was. And he looks just like Daddy, too!

For his birthday "party" we had Mickey plates and napkins and invited family over. He adores his two cousins! We got to have cake and icecream and play outside on the playset. A nice quiet birthday party....for once!

No laughing at my cake....I just wanted him to recognize Mickey,
and he did For Your Information!!

Cousin 'siah and Sid the Science Kid
Agelica Pickles and Cousin Logie
Princess Pea and the Birthday Boy
Cousin Logie is a super climber on our playset

Cousin 'siah and Boo Boo adore each other

Grandma K made Boo Boo his 2-year-old quilt (she does a baby quilt and a 2-year-old quilt for each grandchild) and she used penquins and Veggie Tale fabrics....Boo Boo's favorites!

We got Boo Boo another penguin, a book that has pictures that move, a wooden pizza set by Melissa & Doug (he loves our birthday cake set), a Mickey book set with little figurines, an alphabet/shape/color flip car seat toy, and a Fisher Price camera because he loves taking pictures with my camera.

Happy Birthday, Boo Boo! We love you!!!


I tried to get some good pictures from Easter, but didn't have much luck....

Boo Boo's birthday just happened to fall on Easter Sunday this year. Easter is a special time for us to remember the sacrifice that Jesus made for us on the cross at Calvary. My little sister-in-law Norah did an amazing human video at church today that depicted Christ as he was taken, beaten, put on the cross, and laid to rest in a tomb. They also showed how the tomb erupted when Jesus rose from the dead. It was very powerful.

Christ's sacrifice is the only way we live in hope of a new and better life with our King. The earth is broken, but as Christ enters our life we also begin a new life here on earth. One with purpose. The world is not perfect and life brings challenges and hurt our way constantly. But if we put our trust in a God who saves, He can continue to form us to His image as we live this life to bring glory to Him and to win souls that will someday enter the kingdom of God. I am so thankful for Christ's sacrifice and the hope Easter brings.

Myra in her hand-made Easter dress

The girls LOVED their matching Easter dresses....

This is also a special Easter because the three oldest children have accept Christ into their lives in the past few months. Angelica Pickles started a random conversation by asking, "When will we die and see Jesus?" I explained that I didn't know when but asked her if she wanted to live in heaven forever with Jesus some day. We talked about the only way we can do that (confess with our mouth and believe in our heart that Jesus is Lord) and we talked about Jesus dying on the cross so that we could someday be with Him forever. She said, "I want to be with Jesus forever, Mommy." I asked her if she wanted to ask Jesus to forgive her sins, to write her name in the book of life, to lead her to do what God wants her to do, and to allow her to someday live in heaven forever. She just smiled big and said, "Yes! I want to do that!" So, we prayed right there in the car.

I found this sweet Classic Pooh bonnet and Myra looks fabulous in it!

The next day Sid the Science Kid approached me a little apprehensive and said, "Mom, can I do what Angelica Pickles did yesterday?" I asked him to explain what he meant and he went on to say that he wanted Jesus to lead his life and allow him into heaven one day, too. Him and Princess Pea actually said the sinners prayer about a year ago, but he said he didn't remember. I told him he was welcome to ask Jesus into his life and he chose to go to him room and pray alone. I asked him afterward what he prayed and it was very sincere. Princess Pea separately came to me and asked something similar and also prayed again that same day after a long conversation. It was a very emotional two days, to say the least!

Boo Boo's new Easter basket

So, this Easter is a special Easter for them. They got to partake in nailing a nail to the cross at the Good Friday service and we got them special devotionals for boys and girls that Mr. Prince and I are going to do with them a few times a week. I think one of the greatest blessings a parent can have is watching their children accept salvation. More than any other accomplishment in this world, eternal life is my greatest hope for them. I know they are young and will probably still accept Christ over and over in their lives as they grow and change, and will possibly still turn from him at different points in their lives. But, I have high hopes that they will see Christ in the lives of the family members around them and stay in the faith.

Do you believe in the hope of Easter? I pray you do...

Besides Easter service and a wonderful dinner at my in-laws, we had our own little Easter Egg Hunt at home and a few little treats in their Easter baskets. We don't do Easter baskets every year, but the tradition I want the kids to remember is that we always get a family game for Easter. I picked this Mickey Yahtzee up a few months ago and so far it's a big hit! The kids had a great Easter weekend and we have a busy Spring Break ahead of us!


My random photo op of Boo Boo....LOVE IT!!