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!


Linzmcgregor said...

PS Becca got her first kiss from a boy by Sid. I even got to witness it! I think we can start talking about arranging their marriages. I APPROVE! :)

Mommy K said...

How did I miss that!? It better have been on the cheek! You have another gal here in IN to compete with for his hand... Kyler has had a count down for over 2 years now, planning to marry her as soon as she turns 18! LOL!