Walker in less than 90 seconds - LITERALLY

Something must have distracted him here.....an unfinished job.
It must have been the pondering question of....

(Yes, I know I must get these delivered before the New Year!)



Just how much floss is there in that tiny tube anyway?











Or maybe, the need to try (unsuccessfully) and escape.













Apparently, this is where he obtains energy for his speedy destruction. Notice that the bag is almost completely empty.






Upon confronting him about his M&M consumption, he was totally ashamed!








Ivey has a tiny stomach bug today. All I did was leave the room - for less than 90 seconds - to check on her. I have yet to determine exactly what Knox was doing in those 90 seconds.

Ashley's Journal

For weeks now I have been following Ashley's Journal. So many times I have stood in awe at this mom. Often I have been told that I am doing a great job with Ivey. But let's be honest here, what other choice do I have? This mom had a choice; she chose to take a child into her home and love her as her own. My heart has broken as I have read her past few posts.

I have sat in a hospital room in the witching hours of the night wondering Ivey's fate. The clicks of the equipment, the alarms, the IV's and needles, the fluctuation of numbers on a computer screen, the medications are all a constant reminder of how fragile life really is. They are constant reminders of the unconditional love for my child. The sounds are constant reminders of choices and decisions that must and will be made. In the witching hours, the sounds are magnified-at times unbearable-other times comforting-either way, as long as I hear the sounds Ivey is okay. I have often wondered about the same things that this mother is enduring. More than likely, I will one day walk in this mom's shoes.

Please click on the link at the side and read Ashley's Journal. Be sure to scroll down and read 'Praying God's Will'. This mom and family needs unwavering encouragement now.

Gwen

Merry Christmas

Wishing you all a wonderful Christmas. May the true magic of the day engulf you. Amongst the festivities, feasts and family, take a moment to bless the one who was born on this day to guide us.

A child was born...

And they rest.....

Sweet security

After a long day

Ooops, where did she go?
Now, if only Matt and I could just get them to do this all at the same time....

We're breaking all the rules

today we took all of Ivey's monitors off of her and just let her be...a baby. And guess what, she loved it. For a little reward, she rolled over!

Don't tell anyone (especially my mom) but we let her have her first taste of real food. Considering that she isn't very successful with a bottle yet, this was a great moment for Ms. Ivey. A little peppermint ice cream.... she would smack a little then open her mouth like a little bird. Adorable.

I took pictures, but cannot get this computer/camera to cooperate!

gwen.

ps: I can tell you that it has meant the world that so many of you really took Ivey's last post to heart. Thank you for making a difference.

Step.

Okay-
I tried to reason about this.
I tried to give the benefit of the doubt.
I said a little prayer about this.
I cried about this.
I phoned Tasha and vented this.
I came home and jotted it in my notebook so I could 'Get Over It!'

Still.
I am replaying it in mind over and over.

This scene will happen again.
How will I handle it next time?
Will I be patient?
Will I throw a fit?
Will I ignore it?
Will I just act like it is nothing?

What kind of example will -I- choose to set?

I can run for miles and miles. Well, I haven't quite worked back up to that, but in my time before babies and in the short spans in between babies, I run. It is taking me a little longer than normal to jump back into things this time around, but I'll be back. I have a small constant dedicated group of girls that I run with early in the mornings. We have ran a 1/2 marathon together and many other races. Each step took time, commitment, determination, stamina and a lot of sweat.

Each morning we would find a balance. Lauren is tall; so I am sure she slows down. I am the shortest at 5'6 so I speed up. Suzanne hits somewhere in the middle, so more than likely she is the tempo. Either way, we always adjusted. No one had to say a word. We just took step after step after step. A Rhythm.

This morning I unexpectedly found myself (and Ivey) entering into a new race of steps.

As I pulled into the parking lot to visit her pediatrician, which is also shared with the hospital, I forced myself to drive toward the handicap parking spaces. I swallow selfish pride each time I do this. 'I' have no reason to be there, but my daughter does. Many times I have allowed my own tendencies to prevail and parked further away because I stroll her where ever we go, at Ivey's expense. Stubbornly saying to myself that I will teach her to be strong, to not be an exception. Why would we need special privileges?

We don't - She does.

As I pulled past the handicap spaces, I watched two individuals emerge from their cars and briskly walk toward the hospital. It was cool this morning. All spaces were now full. I told myself that they must have a heart condition. Obviously, they did not have a bad back or a limp. I drove on...saying a little prayer that God would zap them into doing the right thing next time. He can do that right?

I drove the up - down of the rows. Nothing.

The space we found was the next to the last spot on the last row. We actually parked right next to Beth and Willie's truck - with Lotto inside.

...............................................................

I get out of the minivan, heave out the stroller, roll up to the side of the minivan and begin placing Ivey's equipment strategically in the stroller. Heart monitor in the basket underneath the seat, pulse-ox on the jump seat...and then I stop.

A man is trying to pull his minivan into the very last spot of the isle next to me. The last spot, get it while it's hot, right? He can't; I am taking up half of his space.

Pulse - ox begins to alarm.

Hope he's patient. I must address this.

Ivey needs suctioning. Pulse-ox still alarming, yet baby isn't blue.

Man is now inching his way into the parking spot. Doesn't he see me standing here with Revelations unleashing right in front of him?

Oops. Now the heart monitor is alarming. It's okay, a lead just came off of her chest.

This man is actually tapping his watch at me! Tapping on his steering wheel. Now he is rolling his eyes!

Okay. Alarms are under control.
Now, pink bag in the stroller. (Pink bag contains emergency supplies.) Pink notebook over the stroller handle bar. (Pink notebook contains all of Ivey's medical history.) Suction machine on my shoulder. Purse is a backpack - got it too. Where is the baby? (Still in the car.)

He is still inching his way into the parking spot. Does he not see the baby being transferred from the car to the stroller?

Okay, let's go. Stop. Ivey needs suctioning again. (There's some fumbling around here trying to juggle full hands and the pressure to be quick, even though M.Y D.A.U.G.H.T.E.R C.A.N'T B.R.E.A.T.H.E R.I.G.H.T T.H.I.S M.O.M.E.N.T!

(Ivey's trach must be suctioned or she can't breathe through the mucus and her oxygen levels drop.)

This man has actually pulled his car so that I can't turn the stroller around. He has actually pulled so that the stroller barely fits between our two cars. Is He SERIOUS?

I managed to squeeze between our minivans without making contact with the man. And for a fleeting moment, I was thankful that my daughter could not see the lack of patience on that mans face. The steps across the parking lot this morning had more meaning to them than any step I have ever taken in my life. I am almost certain this scene will happen again.

..............................................................
Over the past couple of days I have received several emails and phone calls. Everyone wants to know what they can do to help.

I have my answer.

Make a difference. You will all be out doing some serious shopping over the next few weeks. Be the one to WILLINGLY park in the last space of the parking lot isle. Be THANKFUL that you can take those steps. To most of us those steps are taken for granted; they are not. Each step you take is a true GIFT from God. Ivey may or may not ever walk. Time will tell. EMBRACE each step, be GRATEFUL that you have two strong legs to carry you, even if it seems inconvenient at the time. Be thankful that you can independently take those steps. Remember this season the true meaning of this wonderful life you are embarking upon and just how precious it is.
-Become the Give, not the Take-

You may give a gift to someone who takes larger steps each day just to live. It is all in the rhythm of life.

I have three children and their steps will be filled with precious time, commitment, determination, stamina and a lot of sweat. I will step-up and set the example. They will learn the balance of what matters in life: slow down here, speed up there, be the tempo other times. Step. Step. Step. Step. Step. Step.......

Deprivation

One week has pasted since I have posted any new information about Ivey, or anything else for that matter. I have attempted several drafts, but hesitate to post them. And several of the drafts I have deleted completely. Why? Optimism is at a low. I am mentally drained, physically depleted and emotionally broken. No matter how up beat I have tried to start each post, they all end in sallow mood. Therefore, I have avoided my computer all together.

I have found over the course of the past few months that deprivation tends to multiply emotions. The past eleven days have consumed every ounce of drive and togetherness that I strive to retain. Every nerve in my body is more sensitive; my emotions are completely on my sleeves. Eleven days ago I knew the schedule that we were about to adhere to was going to be more taxing than anything that we have ever experienced. I was prepared for Ivey to come home. No mistaking it, I was completely ready. However, I was not prepared for other events of the past few days to unfold in the order and manner in which they did.

If I were being completely honest with you, there are several things I know about Ivey that only Matt and I speak of amongst ourselves. A life involving seizures is one of those things. We had hoped Ivey had dodged this bullet. Quiet frankly, I am not so concerned about coping with her seizures. I have adapted to her resume' of certainties and uncertainties. This particular trait can be controlled, so unlike many of Ivey's other medical issues.

I have sat in many doctors' offices over the course of the past 7 months. This is the list as of today: pediatrician, cardiologist, pulmonologist, geneticist, neurologist, ophthalmologist, orthopedic surgeon, cranio facial plastic surgeon, orthodontist, ENT, gastroenterologist, ocularist. This does not include specialty areas such as the nutrionist, respiratory therapist, physical therapist, occupational therapist, speech therapist, and at home nursing. They are all specialist in their fields; they are some of the best. These doctors have forgotten more information than I could ever remember. And yet, they all have asked me questions concerning Ivey that lay the course of her fate in my hands. I am the Mom. You may not grasp the reality of the rarity of Ivey's diagnosis. It is not in medical books, you can not find it on the internet, for if you type in chromosome 21 deletion, you will eventually find Ivey's blog. Case studies involving other infants with Ivey's diagnosis are limited to less than 2 dozen-ever. There is nothing concrete.

So I sit across from brilliant men and women who ask me to tell them about my daughter, my observations. Matt is very much a part of all of this; none-the-less, all eyes turn to me because I AM THE MOM. Various physicians have dealt with individual issues that are known to Ivey; however, not one has ever seen a child like her as a whole. The pressure is at times unbearable, and yet it is always manageable.

There are three days that have pushed me to a place I hope none of you will ever visit. One, the highest and lowest point in my life - Ivey's birth. Two, the first day after Ivey was trached and I had to watch her lay in a bed sedated on a paralytic and I was barely allowed to touch her, let alone hold her. Three, Monday morning watching her seize and not being able to do one thing to help her or stop it. All three days, my instinct as a Mother to save my child were beyond her reach. I can handle doctors. I can not accept the feeling of helplessness and failure as a mom.

Today was one of our tougher days. The past two weekends Alicia was here. She met us at the door Ivey's first night at home. Ivey will miss her; Knox and Walker will miss her; Matt and I will miss her. This morning we said goodbye. -I can not talk about it right now.-

I think that the arrival of the Holidays has also added a spin to our whirlwind life. This year there is no Christmas card going out. The idea of shopping for Christmas sends me into hives. Our days are so scheduled and determined I can not schedule in enough time for fluff outings. (If this post makes any since at all, I will be lucky, for I keep having to stop my train of thought to silence the annoying false alarm of the pulse-ox machine.) I did get to go to a Christmas party this past week. It was wonderful to be out with friends. It is one of the few things I have done in the past 7 months that expanded beyond a handful of close friends who protect me at all times. It was thrilling and dreadfully lonely all at the same time. I realized how much I miss seeing everyone. I realized a life left behind that will never return.

All said and done, we made it through a tough week. I pray that this next week will prove to be good, with no trips to the hospital, no new tricks for Ivey, and two sweet boys who will not fear what tomorrow will bring. No, take that all back. I hope tomorrow will prove to be good with no unexpected events. Let's just take this one day at a time!

Back at Floyd Hospital

Ivey was admitted into Floyd for observation early Monday morning. Around 6:15 Monday morning Ivey had her first seizure. We transported her via EMT to the hospital. She did stay overnight for observation and seems to be doing well. She is on medication that will prevent her from having other seizures. Ivey will also have procedures today to try and determine where to go from here.

We have known from the beginning that some children with Ivey's genetic diagnosis have been known to have seizures. However, not all have them. We were hoping to have dodged the bullet. More than likely this seizure was not a single incident, she will probably be prone to seizures in the future. They can be controlled with medication. The focus will be on 'Why?' she is having them.

There are so few known cases of this particular genetic diagnosis. There is a very limited amount of information so it is vertually impossible to predict her future. As with many genetic disorders, such as Downs, there is information to compare; Ivey's situation is not so simple. Everyone uses their best medical experience and still Ivey seems to do her own thing.

So she is here at Floyd on the pediatric wing.

Gwen.

Rewrite

Well, if you read this post last night, you will notice that it has altered slightly. Last night we were waiting to meet a new nurse for Ivey at 11:00 p.m. This morning at 4:00 a.m., I am the nurse taking care of Ivey. Matt was the nurse from 12:00 a.m. to 4:00 a.m. A slight modification to this post was required. I guess that particular person just was not meant to work with Ivey. Obviously, she was not a perfect fit.

Ivey came home Thursday. It was amazing to watch the boys unwind as soon as she entered the door. They began to eat better and best of all, they have slept better over the weekend. Also, they have barely left their sister for a moment.

Ivey had a great weekend. She is slowly adjusting to her new home. Keep in mind, we moved and our new home is not home to her. We are all working Ivey's new schedule into our daily routine. We thrive on a schedule around here - a schedule that did revolve around Ivey's feedings - a schedule that now revolves around her feedings and the care and maintenance of her trach.

Once everything is incorporated, things will run like clock work around here again. We have added more equipment to carry around, but we are quickly making adaptations to make mobility a little easier. And where we have added more gadgets, there were some advantageous trade offs for those gadgets. For example, the G-tube she now has for feeding is much easier to work with than a ng tube. Also, on Wednesday before Ivey came home, the doctors inserted a J-tube within the G-tube to hopefully help with her feedings. The J-tube bypasses Ivey's stomach and goes in to her intestines, the duodenum to be exact. Now we feed her through the J-tube. The bonus of the J-tube is that she should now gain weight faster and it seems to have alleviated a vast portion of her reflux. Yeah!

Hope you all had a great weekend! Can't wait to see you!!!
Gwen.