Sunday, June 27, 2010

Miracle Myra is 9 months old

Wow, these last 9 months have been a whirlwind.

Myra holding her chapsticks to help open her hands

Baby girl is currently weaning from the ACTH medication for Infantile Spasms and the hypsarrhythmia on the EEG is gone, unfortunately the physical spasms are not. But, we are still thankful for that and praising God that she can start developing again! She is 12lbs, 25in and is just starting solid foods again since her extended hospital stay in May. She is smiling again and a little more alert than she was the first few weeks on ACTH.

Here is a kicker, though... So, my understanding is if your child has high muscle tone, they will always have high muscle tone. If your child has low muscle tone, you can strengthen the muscles to improve it. Tone can change in the first few years, but becomes stable between 2 and 3. So far Myra has had high muscle tone since she left the hospital. It used to be higher in her arms than her legs, then her legs seems to get worse. She couldn't raise her arms up over her head without crying and couldn't lift her leg at a 90 degree angle without crying. I was stretching her muscles multiple times a day to ensure they wouldn't get worse from constantly being contracted. My therapist told me that high muscle tone is actually harder to overcome than low muscle tone. Not great news to hear.


In the last month I have seen some changes! Myra's arms and hands aren't straight/stiff constantly and she is moving them more. She is not bothered by any stretching exercise anymore. I asked her therapist if she had noticed a change and she had. She said she has NORMAL muscle tone! And she assured me that in 15+ years of therapy, she has never seen high muscle tone just disappear!


We've known all along that God has special plans for Myra. I have believed from the beginning that God wanted to heal her and use her story to impact the lives of many. But, to live through miracle after miracle is actually quite overwhelming.

Another thing I've noticed recently is these precious curls forming behind her big, floppy ears. That is exactly how Angelica Pickles' hair came in! I was excited thinking about another little curly top, and then remember the vision God had given our pastor about Myra.

He saw a three-year-old little girl with dark, curly hair dancing in the isles of the church. This was just a day or so after she was born, when they kept telling us she would likely die. I knew she wouldn't, but God confirmed that with the pastor's vision. I can already see a glimpse of that vision coming true! And it still seems so far off, such a stretch from what the medical world is telling us. But, my faith will not waver. I will not put my trust in doctors and specialists. I will only put my trust in the One who is capable of truly changing circumstances and truly healing!

I have my moments. I saw a precious little girl at a NICU reunion this past weekend, Bailey. I guessed her to be around 3 or 4, but she was in a stroller and not very verbal. She kept motioning for me to come bring Myra over to her so she could see her. She would pat Myra's back or touch her head. Then she would pull the sling tail or my hair until her father stopped her. A few moments later, it would start over again. Love on baby, smile and then pull on Myra's bonnet strings or pull my shirt. I wasn't bothered by it. I would kneel down each time she asked and talk to her. Her mother eventually told me she was six. I never asked why she was delayed. But, as I walked away I asked God to bless that family and to touch Bailey. And my heart hurt for her. And I selfishly asked God to allow Myra to have greater abilities. And my heart turned toward the "what ifs" that are way to dangerous to visit. I still have those moments.

But, then later tonight I was watching the International House of Prayer webcast (at 4am with Myra) and watched a teenage boy be healed of vision issues. And I wept and prayed for Myra's vision. And God gave me a peace about her development and abilities. A promise that He has a greater Plan. A reminder that He loves her more than I could fathom. And empathy for my aching mother's heart. And I had peace and love and joy. And my whole body yearned to just praise Him and sing to Him. So I did. Those are much better moments.

So, we are 9 months into the two greatest journeys of our lives, the one with our miracle baby girl and the one with our Heavenly Father. And we have so much to battle, so much to defeat within ourselves and, also, so much to gain. It's the gaining I must focus on. And the battles I don't have to fight alone.
Myra enjoying Tummy Time

I am still a little rattled since Myra's birth. It took me 9 months to get back to full working order after Boo Boo - menu plans, cleaning routine, spiffy house, kids in line, brain in order...for the most part. At nine months post with Myra I feel like I'll never get there. My house is a mess, I struggle to get more than macaroni and cheese or quesadillas on the table, the cleaning can't come until the clutter is gone, my brain is spinning constantly and the kids, well...they aren't too bad. Everything affects something else and it's a domino affect. I can't pick up the office until I get rid of half of the book in there. I can't put extra unused toys away until we clean out some old toys from the totes in the basement. I can't put away my clothes until I buy a new maternity tote. There is always something else to do before I can move forward. A vicious circle. Vicious. Such is life, right? Ugh.

Despite the house and current routine, I MUST get school up and running as soon as the two older kids are home from Clubhouse. My plan is to finish the current history/science curriculum (MFW Adventures) by December so we can start our Galloping the Globe study in January. By then all the math and language we are behind on should be done and we'll have Jan-Aug 2011 to catch up for the 2011-2012 school year. I'm looking forward to creating that curriculum, but also not. It will be a TON of work. But, my kids are worth it. =)

So, my next two weeks are full! Hoping I'll still get some time in the sun with my 3 littles that are home right now. And, I need to go visit my new niece again soon! The onesie I got for her said I was her "BFF" so I gotta act like one!

Myra and my niece Avery, 9 months apart

Here are some random photos from Father's Day, the NICU reunion we attended and Mr. Prince and the kids iceskating at Clubhouse:

Mr. Prince and the Klan on Father's Day
Mr. Prince and Myra

Cheesy Boo Boo lovin' him some icecream

The Klan all painted up!

Mr. Prince helping Sid the Science Kid

Mr. Prince, Sid and Princess Pea

Mr. Prince helping Princess Pea,
she wouldn't go out on the ice without him...

Happy Summer Time!

Tuesday, June 22, 2010

I am a Proud Aunt Once Again!

Mr. Prince's sister, Sarah, had her baby on June 21st! It was her longest labor and third child. She has two little boys named Josiah (4) and Logan (2). She had been contracting all of Sunday and decided to go into the hospital Sunday night. They didn't record any contractions, but her cervix was 3/3.5cm and they decided to let her walk an hour and see if her cervix was changing. After an hour, her cervix was a full 4cm, but the on-call doctor decided to not admit her and told her to call her midwife in the morning. She was frustrated, but I went home with her figuring she would just get some rest before the morning. We got home around 2am, but at 3:40 starting timing her contractions. They were 2-5 minutes apart for a while and starting to get intense. Then, she went potty and things started slowing down a bit, but contractions were never really more than 11 minutes apart. Through the early morning, contractions started to get regularly 8 and 9 minutes apart and she just tried to rest. Around 8:45am we headed into her midwife's office and she was 6 cm dilated! The midwife thought she would go quickly, so immediately sent her to Dupont Hospital next door to get some antibiotics started for GBS.

It wasn't until 2pm that they broke her water and shortly after, gave her an epidural. Prior to breaking her water she was still 6cm, but immediately after she was already 8cm! Her contractions weren't really picking up and they upped her dosage of Pitocin a few times. Still no contractions. At 4pm she was still 8cm. Finally, around 7pm she was fully dilated, basically with no contractions?! She didn't feel pressure, but when she got into position to push, apparently they could already see baby's hair! Two pushed and Baby Avery "Ava" Laine Barbara Exford was here! She was 8lbs 2oz, 22in long born just a little after 7pm. Laine is Sarah's father's middle name and Barbara is both Sarah and Brandon's mother's names. She is absolutely beautiful! Perfect chunky legs, a possible crooked pinky like her mama, dimples like Logan, and possibly reddish hair like her Daddy!

Proud Mama

Myra and her first girl cousin!
They already have a duet down!

Congrats, Brandon and Sarah! You did good!

Friday, June 11, 2010

Summer has Begun, but the Rest of Life Seems to Stand Still....

I simply cannot believe that it's June. I'm still stuck somewhere between March and April. Myra is almost 9 months old, Boo Boo is two and Angelica Pickles is 4! Poor Angelica Pickles, we had to postpone her Fairy-themed birthday party because of how sick Myra has been on this ACTH medication. Us girls decided that, since Myra's immune system won't be 100% until September, we would reschedule and have a Fairy party for Brynnan's 4th, Myra's 1st and Princess Pea's 6th birthdays! And only ONE party for Mama! I think I got the deal in that arrangement!

I haven't had a chance to post Princess Pea and Angelica Pickles' dance recital photos yet. I left the hospital one Saturday to take them. They were adorable! Their entire class forgot what to do on stage, but they are just up there to look cute anyway, right?

They posed this one themselves!

Well, it's been a month since Miracle Myra has been on this evil mediation. Here are before and after photos:

Myra before starting ACTH
Myra 1 month on ACTH

Thankfully things have been going pretty good since we left the hospital on May 24th. Myra's potassium regulated by the 28th and the oral potassium and daily blood draws were finally over. She still has some weekly home healthcare to monitor her glucose and blood pressure, and we will have to start checking her potassium levels next week when we start to lower the ACTH dosage. She did get another double ear infection. I tried to get rid of it with some natural methods, but after four days things weren't getting better and we were going out of town at the end of that week, so we unfortunately had to start antibiotics.


But, that's finally over and she has been so happy and smiley this past week! She did another video EEG on Monday, June 7th and her neurologist said she saw NO seizures or Infantile Spasms! Wow, amazing new....right? Except, she is still doing the physical symptoms of the spasms...? She actually did them during the EEG, too. The neuro didn't really explain why she was still having the symptoms, but said she was likely to have partial seizures that were uncontrolled forever. Well, I really hate that they keep speaking that into my daughter, but besides that, this is exactly what she was doing with the Spasms! And if they ask me in a few months if she is still spasms-free, we will have NO clue! AND, if she isn't developing, we won't ever know if it's because she has started the spasms again, or if it's due to the underlying brain damage... Ugh. So, I sent a copy of her EEG to our neuro down at Riley and hopefully she will give me some more information. We see her on July 12th.

Happy during EEG

As for the rest of my life besides little Myra, it's a disaster. Homeschooling is so far behind we will likely start "next years" curriculum in January 2011. Hopefully by the 2011-2012 school year we will be caught up! My house is the worse it has ever been. It's not like me to have a messy house. Toys all over maybe, but not dishes piled up, laundry waiting for weeks to be put away in baskets, dirty laundry piling up, mail not gone through for a month or more, no vacuuming for weeks, bills paid a month late, bathrooms dirty, etc.... I seriously do not know how I will get back on track. I have great friends offering to help, but no one can do this work for me. I will probably have to utilize the home childcare lady who has been watching the kids for us to get some stuff done. Myra is doing so much better so she doesn't need held all the time, and she is getting back into nap routine and all that. So, that will help. Just imagine having a newborn for 9 months: diaper changes 8+ time a day, lots of cuddling, short naps, up on and off every night, nursing every 2hrs. It's exhausting for 3 or 4 months, let alone 8! But, I really do love my time with her, just can't take where that leaves the rest of me...

After all the hospital chaos, we took a quick trip to IL for the wedding of a dear friend of mine. I have known Linz for almost 20 years now! Sounds crazy just saying that! Can we really be that old? Anyway, all four of my own bridesmaids were in her wedding, too. We all did 3 wedding together back when the first three of us were married, and now Linz just got married and the last one, Manda, will get married in September! Very exciting year! Along with the birth of Bec's first born, too! Life is just moving so quickly these days.... Here are some photos from her beautiful wedding. I only agreed to take all the kids because both my parents and their spouses would be there to help!
PaPaw and Princess Pea

Grammy and Angelica Pickles (being a booger)

Grandmama and Poppy dancing with Boo Boo

Poppy and Boo Boo had some fun games going on the whole wedding

Mr. Prince and Myra - both gorgeous!

Angelica Pickles, Princess Pea and Miracle Myra

Ok, this was funny... Sid the Science Kid was very shy and nervous to go dance until 3-year-old Lily asked him to dance. She is the cutest, most outgoing 3-year-old I've ever met! Anyway, he agreed and they had a blast. I even heard her shout, "Sid, chase me!" and one point and he followed her direction. Until....

Miss Becca, who is also seven, introduced herself to Sid and decided that since they were the same age, they should dance together. She replaced Lily hands with her and off they went!

That was a true steal! And Becca and Sid danced the night away... That, or Sid chased Becca all night long while she played hiding games with her girlfriends and teased him to no end. He still loved it! Too funny!

And so summer begins. Watching Daddy play softball on Monday nights, walking to the fountain to play in the hot sun, visiting Grandma and PopPop, parks, picnic lunches, birthday parties... Mr. Prince is a math teacher at a Clubhouse school program for 4-5 weeks in June/July every summer. Last year Sid the Science Kid had a blast learning about the 50 states and the history of our country for his first year of Clubhouse. This year, my precious little helper, Princess Pea, was dying to go in the kindergarten class. So, I'm am -2 for the next 5 weeks! I'm actually sad about it. Though I can get some one-on-one attention with my littles, I will miss my helpers and the daily interaction with them. I went to Clubhouse yesterday to be with them on their first day and loved the kisses Princess Pea would sneak to Myra between activities and the smirks Sid the Science Kid would give me after he answered something correctly. This is my niche with them, teaching and learning. I love teaching. And I love the family bond it creates. But, I think these two of my kids would very much love school. I loved school myself. And sometimes I feel sad that they won't get that interaction that I had. Though, I know it's is more of a curse than a blessing, which is why I'm homeschooling. Still, there are things I can't provide for them here that I'd like them to experience, or things they can't experience very often. Kick-ball games, messy art classes, healthy academic competition with peers, obedience of authority other than myself, learning how to make a new friend, a school bus ride (yes, this apparently is very important to homeschooled children). So, being that my husband knows these teacher and students very well, it's a small town, and it's faith-based, it's the best environment I can think of to give my kids that "school" feel. It's not necessary, but it's fun for them. So, I'm all for it. We still watch the situation very closely and will adjust accordingly if we must. Last year, Sid did not go on all the field trips. This year, I like all the field trips and I will go with them on all the field trips. It's all balance. I could NOT do this every day for 9 months thoguh, NO WAY!

So, for now we continue to work on getting our life back on track and raising 5 godly little ones. It's hard work. But, oh how I love being a mom!