Friday, March 29, 2013

Ava Update

I just wanted to thank everyone who has been praying for our sweet girl. She has done really well with the Keppra, and we have not seen any seizure activity since starting it. PRAISE GOD!

A lot has been happening in her little world, it seems, so I thought I would just give a quick update on some of the things she has been up to lately...

  • She has been walking around with her hands behind her back. I don't know where she got that, but it is pretty funny!
  • She had an Easter Egg hunt at school today, and the teachers said she had a blast! They said she wanted an egg in each hand at all times!
  • She has several boyfriends at school, and I am told they all like to watch out for her and make sure she stays in line! You tell her, guys! HA!
  • Her teachers call her Ava-licious. Which I find hysterical!
  • One of her teachers refers to her as "my baby" which of course makes me just so happy!
  • One of her classmate's mom just LOVES Ava. I think she would take her home if I let her!
  • We are starting to introduce potty training. Fun times. I have no idea what I am doing! With typical kids, it is hard enough- but at least there are books and guides and tips! Special Needs kids, especially Angels, are all so vastly different that there really are not many resources- or maybe too many?! It is hard to know where to start!
  • Archer has really started to notice Ava and laugh and smile at her! Just makes my heart leap to see the love they already have for each other...I need to remember those moments in a few years when they are fighting!
    Sweet girl, with her hands behind her back!

Thursday, March 21, 2013


"For I am the Lord your God who takes hold of your right hand and says to you, Do not fear; I will help you."                                                                                     -Isaiah 41:13

Last night, about 1:00 am, I woke in a panic. I had had a dream that Ava was in the throws of a massive grand mal seizure, and there was nothing I could do about it. I couldn't find her rescue medication, and I couldn't scream so that anyone would hear me. We were in the middle of a crowded room, and I was sitting on the floor watching her seize, feeling painfully helpless, and I just couldn't get out a scream for help. If dreams are insight into our subconscious, it doesn't take an expert to tell what is weighing on me!

Every since Ava had her tonic-clonic (formerly known as grand mal) seizure last week, I have felt in a constant state of fear and panic. Not immediate, crazy fear and panic. The nagging kind. The kind that keeps you up at night, staring at the monitor to make sure she is still breathing and not convulsing. The kind that creeps into your mind in random moments. The kind that feels like the weight of 1000 boulders. That kind. And honestly, it really sucks!

Now I pray throughout the day. Just in my head. Not big, formal, long prayers. Just short, conversational prayers. Because really, isn't that what prayer is? A conversation with God?! And I rarely say "Amen." Why? Because it feels like I am saying "goodbye" at the end of a phone call, or ending the conversation with the Lord. And I never want to end the conversation with God! But lately I have been saying "Amen" at the end of my prayers for Ava. If my childhood Sunday School memory serves me, "Amen" means "Let it be." And I want, most especially, my prayers for Ava to "be." I pray for her safety. I pray for her little brain, that it won't seize. I pray for the medication to work. I pray for her protection from those evil seizures that have taken far too many Angel children from this world. And I pray for the rest of our family. I pray for restful sleep for Cole and Archer, I pray for the Lord to take these worries from my shoulders, I pray that He helps me leave them at His feet, instead of constantly taking them back upon myself.

Last night, laying there in bed after waking up from that dream, I was trying to catch my breath and realized my throat was dry and sore from doing that "silent screaming" in my sleep. I just started crying, and asked God to just take those worries. And He gave me Isaiah 41:13. "...I will help you."

"I will help you." We are not alone. When your child's life is in danger, either from an immediate threat or a looming, ever present one, what great comfort that is. He will help us.  He will not leave us. He holds our hands. He tells us not to fear.

The key is to have the faith to trust in His word.

Lord, may I have that faith. Amen.

Tuesday, March 19, 2013

Archer's Nursery Tour {video}

I decided to do a video nursery tour for Archer's nursery, since I love looking at them on youtube! Sorry I say "as well" WAY too much! You would think someone with a theater and communications degree would be a better speaker! HAHA!


Friday, March 15, 2013

Most days...

Most days, I honestly forget that we are a "special needs" family. Our life just is what it is- we have never known any differently, and we just go about our business.

Yesterday was NOT one of those days. I was reminded just how different our lives are than most. Sitting in the ER at ACH, waiting for them to call us into triage, and going over in my mind the medications she takes- in order of relevance, her diagnosis's, and her history, it donned on me just how different being a special needs mom is.

I don't know why the Lord chose to allow Ava to be born with Angelman Syndrome. I don't really think it is my place to question the "why" of it- although I find myself doing just that from time to time. But I do know that, through His grace, we are able to handle all that comes our way. Even big, bad, scary seizures!

I pray over Ava each night- pray that the Lord protects her and keeps her safe. Pray that she doesn't have a seizure in her sleep that stops her breathing. Pray that she wakes up each morning the happy beautiful girl I love so much. Those prayers took on a new importance last night, KNOWING that she has tonic-clonic seizures. The enormity of the stress is hard to explain and isn't something I can put into words- just suffice it to say it is not fun.

I have so much respect for my fellow special needs parents- they are all so strong. Not by choice, but by instinct. And I have learned so much from them. I am just thankful that we are going through this with Ava in a time and place where we have resources to help us navigate this journey.

So to all of my fellow special needs and Angelman Syndrome parents- thank you for your support, guidance, wisdom, encouragement, and strength! You are all amazing!

Thursday, March 14, 2013

Archer is 3 Months and Ava Has a Seizure

Well, we had a very interesting-and scary-morning around here! So I wanted to write a moment about that before I did Mr. Archer's 3 month post.  Ava wasn't feeling well this morning, so we kept her home from school and planned a 10:00 doctor's appointment. But at about 9 this morning, as I was about to give her a bath, she had her first clonic-tonic seizure, previously known as grand mal seizures. I had just put her into the water, and she was standing, holding onto the handle. I noticed she was VERY rigid, so I thought maybe the water was hotter or colder than she expected. But when she looked at me, I knew immediately something was wrong. She looked panic stricken, and her pupils were so dilated, you could barely see any blue at all.  I immediately followed the seizure protocol- I picked her up, laid her on her side on the bathmat, and tried to stay as calm as I could, while reassuring her it was going to be okay. Cole was in the shower and couldn't hear my yelling for him, so I eventually gave up on that, figuring that my screaming wasn't doing anything to help her stay calm. It lasted about two minutes- I didn't have my phone or a watch, but the radio was on and it lasted through a song (I honestly can't remember which one) and a few commercials. When she came out of it, she was very upset at first, then very lethargic for several minutes. After that, she was just tired and very agitated.

We immediately loaded up and took her to the ER at ACH. They gave her a "loading dose" of Keppra, then gave us a prescription for it, along with dystatin (a seizure rescue medication) and an antibiotic for an ear infection that she has. We are not sure if the ear infection/sickness was a contributing factor to the seizure or not, but we are now adding Keppra to our daily medications. That brings our daily meds up to four- two seizure meds, a reflux medication, and an anti-drool medication. She also takes melatonin at night, although I don't consider that a "medicine" per se.

We got home about 1:00, and we were all so exhausted! We all took a nap- even Archer! Ava is still asleep- she hasn't even had lunch! It was a LONG morning for us all. Especially our sweet girl. Poor baby.

Speaking of babies...ARCHER turned 3 months yesterday! I can't believe it! He is getting so big!


You are about 1 oz shy of weighing 15 lbs now!


You are still very long, and are in the higher percentiles for sure! You measured 25" at our nutrition appointment yesterday, but we had a hard time getting you to stretch out. You were 25" at your last check up, so I know you are longer than that now. But even at 25", that puts you in the 75-90%!


You now wear all 3-6 and 6-9 month clothes, more and more 6-9 month. I went in the attic yesterday and found your sister's old clothes that are more unisex. Lucky you, mommy loved buying Ava jeans! You now have LOTS of blue jeans to wear, which is fun, because they are so cute on you! You wear size 3 diapers now.


Arch, Bub, Bubs, Bubba, Brother, Chubs, Chunky Monkey, BuddaBall


You are exclusively breastfed, and will take a bottle if you have to (of breast milk). But you won't take it from me at all! You love to eat and are eating every 3-4 hours usually. Although sometimes you still want to eat every 1-2 (I think that is when you are going through a growth spurt). You nurse for about 10-20 minutes on one side at a feeding, and it seems to work pretty well for us! I can now pretty much eat anything I want, and you handle it well thanks to your reflux medicine! You have started going about 5 or 6 hours each night, which has been nice! You eat around 10-11, then not again until 3 or 4.

You are sleeping more and more at night these days, and I LOVE IT! Still not through the night, but I am hopeful!

Fun Stuff- some are the same from months 1 and 2!

* You smile and laugh a lot!
* You love your owl mobile that is on your pack & play. That is about the only way I am able to get a shower these days!

* You love to bat at things and love to stare at yourself in the mirror and look at lights and fans!

* You have started tolerating your carseat better, which has been nice!

* You surprisingly enjoy bathtime and it seems to calm you down.

* You have stopped screaming during clothes changes, and you still love to be naked! You just smile and smile when you are stripped down!

* You are more content to just be held without having to be moving. I think now that you are seeing more and noticing more, the movement isn't as important for your sensory input. (listen to me, all OTish! HAHA!)

* You are only fussy in the evenings now, and those times seem to be getting shorter and shorter!

* You love to sit up in my lap, look around, and especially look at our faces and the cross wall!

* You hold your head up so well and are very strong. You are really starting to enjoy tummy time as long as you have a mirror or book to look at!

* You are ALMOST rolling over! Won't be long at all!

* You have started taking a paci on a regular basis. It still isn't "needed" for you, but you will take it and enjoy it some, too.
* You are super gassy and have really stinky toots! But most of the time it doesn't bother you!
Archer- happy 3 month birthday!!! We love you so much and you have brought so much joy and happiness to our lives! We love you!
~Mommy, Daddy, and Sister (Ava)