Quick Update on Abby & Her Hospital Stay

Last week, I posted that Abby may be going back into the hospital. This is still a possibility. We are waiting to hear back from Abby’s neurologist. Last Wednesday, when we discussed admitting Abby into the hospital, we agreed to speak again on Thursday, and then we didn’t hear back from him! I emailed him a few times, and decided to page him this morning. I received a call back from his nurse, and was told he was out of town for a family emergency. He is planning on returning Wednesday or Thursday. 

So, it looks like we won’t have any new news until he returns. Abby’s situation isn’t an emergency, but obviously, we want to start trying the new meds, etc. so we can try to make Abby feel better, and so we  can all go back home, at the end of February! HoPEfully, we hear back from him soon. I will keep everyone posted!

Around the House, Out and About, & Everything in Between!

I have some photos for those of you anxiously awaiting new pics! These are a bunch of random pics I threw together! A few are from around the house, a few are from outings, and one is of Gammy with her girls! Speaking of Gammy, we are so glad she is here! The girls are loving the attention from their Gammy, and we are loving the attention they are getting from Gammy!

An Early Birthday Present-Wedding Memories!

So, my birthday is coming up in a few days. Oh joy! I’ve decided once you’ve turned 30, birthdays just aren’t that fun anymore! However, my parents still like to make a big deal about my birthday, and recently, I received an early birthday present from my dad! What is the present, you ask? It’s all of the professional pictures from our wedding day!!

Not too long ago, I received an email from our wedding company informing us that our wedding pictures were going to expire, and they were available for purchase! Our funds are tight right now, so I asked my dad if the pictures could be my birthday present. As you can see, my dad agreed!

For those of you who don’t know about our wedding, we didn’t have a traditional one! Jay and I like to be different (and sometimes difficult!) We wanted to do something fun, and decided to have a beach wedding in Clearwater, FL. We were joined by some of our closest family and friends. We are fortunate to have a support system that will follow us wherever our crazy a*#es decide to go! Although, it was REALLY hot and took quite a bit of effort, it was an awesome weekend! We will never forget the fun and special time we had with our family and friends, and making the ultimate commitment to spend the rest of our lives together!

I must say that getting these pictures in the mail certainly brought a huge smile to my face. Things haven’t been easy for us lately, and it was nice to receive a reminder of such a beautiful time in our past. Below, you will find some of my favorite pics from our special day. I thought I would share them with you!

Ahhh! Wasn’t it beautiful?? ;)

It looks like Abby’s going back into the hospital…

Abby’s neurologist called tonight, and we agreed it would be best for Abby to be admitted into the hospital. He wants to run a few tests, try new meds, possibly try a temporary feeding tube, and tackle some of the issues Abby is battling. We hate the thought of Abby going back into the hospital, but at least it’s a planned trip, and not an emergency situation. Jay’s mom (Gammy) is coming in town on Sunday, so we will most likely admit Abby, after Gammy arrives.

During our conversation, Abby’s neurologist discussed tweaking her current med of Neurontin, adding a new med for her Hyperkinesia, and also trying out a new med for sedation, so we can travel with Abby. He wants to try these in a controlled environment, to ensure Abby’s safety. This totally makes sense. If we were trying these meds at home, and something went wrong, we are two hours from the Children’s Hospital, which isn’t good! We wouldn’t want her to end up in a local ER!

There are a few tests he wants to run, as well. He wants to check and see if Abby is having any seizure activity, particularly while she is sleeping. He said, “he wants to look under her hood,” meaning he wants to take a closer look at her brain. I’m not sure exactly what testing he has in mind, besides testing for seizures. I’m thinking possibly another MRI. It is common for kids with HPE to develop fluid on the brain, and this is something we discussed, as well. He said it isn’t very common with microcephaly (smaller head), but it’s a possibility. If there were fluid on her brain, she would most likely require a brain shunt.

He is also concerned about Abby’s GI issues, and is getting in touch with a Pediatric GI. He wants to figure out the reflux issue, and  possibly try a temporary feeding tube, to see if that helps Abby’s growth. As you may know, we have been resistant to getting a permanent G-tube, so this may be a good opportunity for us to see if a tube would make a difference, without it being permanent.

At the end of the conversation, Abby’s neurologist said he is going to work on everything, and get back with us tomorrow.  He also said Abby’s doing great, and it’s great that she’s almost made it a year now! He said she does have some tough things she’s going against, and that’s what we need to focus on now, and figure out. He said it’s like putting the pieces of a puzzle together. The kiddos with HPE are all unique, and love throwing the doctors curve balls- Abby is no exception!

Please, stay tuned for an update. Although, we didn’t make any final decisions tonight, it seems like this is going to be the plan of action! Keep Abby in your prayers and thoughts!

This is so me…

I received this cartoon in a Babycenter email, and I couldn’t help but laugh! This is so me, while I am trying to speak with all of Abby’s doctors, etc. The only difference is that I have two crying babies, instead of one!

I needed a good laugh today! :)

Papaw’s Visit

Well, another visitor has come and gone! Jay’s father (aka Papaw) left yesterday, after staying with us for almost a week. We had a lot of fun! The girls loved having a new person to play with, Mommy liked having someone to help keep them occupied, and Daddy enjoyed having his father in town for his birthday!

During Papaw’s stay, we drove along the beach, walked around the boardwalk and shops, played, ate some good food, and Papaw & Jay even went fishing and to the movies! The weather wasn’t too bad. It was about 60, with a cool breeze. Although, we had to plan everything around our little princesses, we had a pretty good time!

There was also one other family member I forgot to mention, who enjoyed Papaw’s visit…Lexi! She had someone to take her on walks, and pick up her poo! Yes, that’s right folks. The Mayor of Carrollton is officially a pooper-scooper-upper!! So, if you are looking for a dog-walker in that area, give him a buzz!!!

Thanks for visiting, Papaw… enjoy the pics! :)

Abby’s Neurology Appointment

Abby had her Neurology appointment yesterday. It was promising, but at the same time a little worrisome. We feel like we accomplished more at this appointment, than we have at previous appointments. I say this, because for the first time, Abby wasn’t zonked out at the appointment!

 Usually, Abby will cry for the entire two hours on the way to the hospital, and is exhausted by the time we arrive. However, this time, she took a nap in the car and only cried for a short period of time. Thus, she was in good condition for the appointment, and her neurologist was able to get a good idea of  the behaviors we have been describing to him for awhile. These behaviors include her constant movement and irritability. He was finally able to see how squirmy and moody she is!

Several months ago, her neurologist said it looked like Abby may be hyperkinetic. Now, that Abby is approaching her 1st birthday, he is able to better  judge her motor functioning and said she has, “Impressive Hyperkinesia.” Unfortunately, “impressive” isn’t used in a good term, either. It means her hyperkinesia is severe. We could have told him this ourselves, because she never stops wiggling! I think I’ve defined hyperkinesia on here before, but here’s the definition for a quick refresher:  an abnormal amount of uncontrolled muscular action/spasms; a disorder occurring in children and adolescents, characterized by excessive activity, extreme restlessness, impulsivity, and a short attention span. This sounds just like our little Abby!

During the appointment, we also discussed  using a sedative, so we can travel with Abby. We told him about our planned trip back to Cincy/NKY at the end of February, and how we would ALL like to go back to see our family and friends! He wants to make it his goal to get all of us back there- TOGETHER! This is promising! He thinks we may have to use some form a valium in order to do so. I think he wants to do a few “test runs” before we attempt the big trip. He even talked about admitting Abby into the hospital for observation, and possibly trying a temporary feeding tube at the same time, to see if that helps with growth. He is currently doing this with another patient that has microcephaly (a smaller head) like Abby, to see if it makes a difference with growth. He also seemed concerned about her recent increase in reflux, and arching.

The thought of Abby going back into the hospital is a bit worrisome to us, along with notion that the valium could have that strong of an effect. Her neurologist was hesitant to make any decisions/med changes yesterday, and wants to think about everything for a day or so. I think he is going to speak with The Carter Centers, and see what they believe is the best approach/course of treatment for Abby. Once we hear something, I will let everyone know! Keep Abbycakes in your thoughts and prayers!

Motivation!

I found this on the Families For HoPE Facebook page. It is pretty cool! It is about mothers of children with severe disabilites. This is a great motivator for me to keep on doing what I am doing! I know that being Abby’s mom has changed me, and not in a bad way! She has pushed me and made me stronger than I ever thought I could be! I HoPE all of you “special” moms out there enjoy this!

SOME MOTHERS GET BABIES WITH SOMETHING MORE… My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more.
 
Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule. Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want.
 
Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?
 
I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw – rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.
 
The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the praise and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.
 
I even wonder how you endure schmaltzy pieces like this one saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.”
 
You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

Happy Birthday, Jay!

Jay is 32 today!! He keeps telling everyone he is 27, but we all know the truth! If you get a chance, give him a call, a text, or leave a birthday message! I’m sure it would make his day to hear from everyone!

Rockin’ the Faux-Hawk!

Okay, I know I said I was posting more about Sydney this morning, but I couldn’t resist posting these pics of Abby! After putting baby lotion on Abby this morning, this is how her hair styled all by itself! I guess Abby is now one of those chicks rockin’ the ‘Jon & Kate, Plus 8′ Faux-Hawk!! Too cute!

I'm a model...

You know what I mean? ;)

Go, Abby! Go, Abby! She’s so stylish!

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