A Cap

Ivey visited her pulmonologist at the Trach Clinic last Friday. A week has blown by without blinking, but I'll get to the good news eventually.

The cap for Ivey's trach is here with us, but due to a cold for over two weeks, Ivey is yet to get much practice with it. The cap is a plastic - well, cap - that covers the opening of her trach. It allows Ivey to breathe trough her nose/mouth. It completely closes off the opening to her trach.

We are waiting to see how it goes with Ivey and her cap. There is potential for a, how did the doctor put it? - behavioral problem. Problem being that Ivey has not left her humivent or passy miur valve on her trach in weeks and weeks. She would rather take them off, sling them to the floor and stick her finger in her trach, thus her finger acting as a cap. With her finger in her trach she chats it up! I can't wait to see if she leaves the cap on......

Okay, so the cap is not really the good news, just a prelude to it.

Mark your calendars for April 25th...Ivey's birthday. She will go back to visit her pulmonologist. The following Monday, the 28th, she will go in for an over night sleep study. If she does well, the trach will come out!!!!! Then she will be observed for 24 hours and come home trach free.

I can't tell you how exciting it is that the dates are marked. Just keep thinking sleep study....must pass sleep study..... Considering that she pulled her trach out today, and never even coughed, I think she is ready. I don't mean pulled it out and I put it right back down. She probably had it out for minutes before I noticed. The part of the trach that is normally in her throat was tucked nice and neat under the collar of her shirt. She is just a bag of tricks. A few months ago I would have panicked....today, with her sitting there happy as a lark, no distress, I have no question that she is ready to say bye-bye to her trach. Let's just hope she doesn't make a habit out of this though!

I ramble when I am nervous...

This morning I have been busy scheduling appointments for Ivey. I have this great calendar that I use as my paper hardcopy then I transfer everything onto my computer in Outlook. Ivey needs her own personal assistant to keep up with her busy schedule and apparently I have been chosen for the task. (I am also qualified as CEO, nurse, doctor, cowgirl, superhero, one of the Backyardigans, chef, short-order cook, housekeeper and taxi-driver. All work is pro bono.)

I thought I might share the calendar that I use for scheduling. It is g.r.e.a.t and small enough to carry in my purse or diaper bag. It is called Amy Knapp’s Family Organizer. It has a monthly calendar followed by weekly lists, a to-do list on each page and a grocery and menu list on each page. If you like organization…this is the calendar for you! You can check it out at www.thefamilyorganizer.com.

So, this morning as I was flipping through my calendar it stopped on a page near the end of the calendar…Amy Knapp’s Family Story. Now why would you put your family story in a calendar? But, one sentence caught my attention…Our blessings can sometimes seem mixed. My initial thought was, “You’ve got that right”. So, I read her family story and guess what? She has a special need daughter and created the calendar because she could not find one to address her many medical appointments and family obligations. I guess that is why this calendar has been so helpful for me. If you are like me just trying stay afloat and in the right place at the right time, definitely check this calendar out. I got mine at Barnes and Noble.

I haven’t posted much lately, but don’t worry things are fine. Ivey has been sick for the past week and seems to be rebounding. It isn’t Ivey illness that has kept me from posting though; honestly, I am not sure what to post. She is doing great, really starting to progress physically. She has learned how to play Patty Cake and she is starting to pick up Row Row Row Your Boat. I haven’t gotten a video up and going yet, but I will soon.

A few weeks ago we really seemed to fall into a comfortable place, and we have. I think I am in a comfortable place with Ivey. Things are going great for her. At one time it was skeptical if she would or could be in the place she is in. Now look at her, she has unlimited possibilities. But things happening have me afraid of the uncertainties that still lie in front of us. I think that finally as things are subsiding with Ivey’s medical state, and especially with the possibilities of her trach coming out, there is now time to think about another side of the coin. What am I going to do, about anything and everything?

Once upon a time it was brought to my attention that the blog, Ivey’s blog, was often dedicated more to my own personal feelings and agenda. I guess it is sometimes, and during times that are scary or stressful it most definitely is. That embarrasses me. When Ivey has been in turmoil in the past I diverted my attention onto my self, as I am doing now. Selfish. So maybe to those who read Ivey’s blog, like any other written document, there is always a point-of-view, whether it is my bias or the reader’s bias. Maybe something I think is funny is read as sarcastic or worse. Also, there is always the question as to why I would openly say things to strangers that are some of our most personal moments. There are several answers to that question.

What most of you don’t see are the relationships that have developed because of Ivey’s blog. Not only are there readers who read just to check on Ivey and her progress, but there are also readers who read because they too are a mom of a special needs child. I have met so many wonderful moms who are in the trenches with me everyday. We have children with special needs. Our routines are unlike our friends. Are our routines harder? N.O. !! Our routines are just different. The adjustments to the routine can at times be brutal, an emotional and mental vacuum. I run to my internet special needs moms at those times. They understand. I can’t tell you how many friendships that have been started by the words, “I thought it was just me”. Strange emotions flare up with many of the responsibilities and stresses of a disabled child. I don’t mind sharing some of those strange emotions because 1: it makes me a better mom to get it off of my chest. 2: There is always another mom who responds because she is there, been there or afraid of going there.

I live in two worlds. In one I am a friend and mom in a “normal” world in the other I am a friend and mom in a disabled world. The two worlds are very different, yet they parallel one another, and if you are in the “normal” world, it is impossible to imagine yourself in the other. Once you are in the disabled world, there is no going back, even if you have “normal” children along side the disabled. And if you are in the disabled world, you know that I H.A.T.E using the word DISABLED, but due to the fact that the distinction lies there, I use the word for clarity.

As for the comfortable place with Ivey, it is here. For the first time in almost two years, I am not waking up afraid, or afraid to wake up. I am not afraid that her life is going to be one of pain and complications. For so long it seemed her life was unnecessarily hard, yet she trudged on and I tried to keep up with her. There were days that I wondered how life could possibly continue on like it was - both her life and mine. Is that a selfish thought, maybe it is to some, but like I said, a special needs world is different and it is permanent. If that life was to be permanent then God grant me strength and courage. It is not, her life is to be happy. What many don't quite understand is that her life is my life and my life is her life. They are interchangable, but seperate at the same time. There is no floating in or out of the disabled world. Permanent forever, forever permanent. I have a friend who lost her special needs son. She entered into the world of moms with disabled children, and even though he passed away she is still here. It is permanent.

With Ivey’s new place, my fears are evolving. For so long I worried that she would die, she was medically fragile. I woke up one day during the holidays wondering when I would die. The table finally turned. If I go, even at a ripe old age, then who will be with her? Needless to say, I began a new panic mode. The reverberation of permanence increased and a new flood of worries flooded in. I guess the permanence of this life style is being to settle into my bones. So many have said not to worry about the future, not to go there, but the future has to be thought about or it would be irresponsible.

I spoke with someone the other day that is finding her self in the new world of special needs. My heart hurt for her. I tried to be encouraging, yet honest. More than likely I rambled unintellectually because I was nervous to talk with her. I found myself telling her that she would grieve. Many people told me that, but they had no idea how true it was. It is gut wrenching to know that a birth can also bring about grief, which leads to a conversation with my MAPS mom a few weeks ago. At some point in our children’s lives we will have to determine how will might explain we cried at their births. I have had to stop and try to get a grip on both of these conversations. Knox has been asking me to tell his birth story. What do I say to Ivey if she asks? And to know that I grieved the loss of the idea of a child so that I could truly appreciate the child that God gave me. Even if Ivey never asks, I know it happened and guilt accompanies that memory.

There are so many emotions that spring up along the path we are on. Some days I want to hear that those emotions are normal and if there is a way to file them away easily. Maybe they are emotions and thoughts that most parents cannot fathom feeling about their children or themselves. I don’t know. Most people are supportive, most try to be and other suggest I should just get over it. Maybe so. It is what it is.

Either way, I have learned that I deal with things much differently than my husband, so for the most part; I do not need to speak for him. Our roles in Ivey’s life are very different from one another. He is the provider and secondary caregiver. I am the primary caregiver. Just ask Scottish rite and they will clear that up if there are any doubts, he and I have signed our lives away to them on that one. Where my husband leaves to work each day to provide for the here and now, he also carries the burden of providing for Ivey’s future with the intentions that he and I no longer exist. I am sure he has been awake many hours at night worrying about how to accomplish those goals.

We treaded the same water for so long. Hospitals. ERs. Medical Issues. Those things keep fading further and further away. New questions and concerns are popping up. When Amy Knapp spoke of having mixed blessing, maybe some of these are what she meant. So maybe it is selfish at times to divert my attention from Ivey. But I need the moms that are out there. So I hope you don’t mind if I am curious about different things for a little while and yes, a lot of it is just me trying to adjust in this ever changing world I am in with Ivey. It is all unchartered territory.

Many of the things Ivey encounters are new for everyone involved, but please understand that I am here with her all day – every day. Sometimes the things that may appear selfish are really fear. I don’t think Ivey falling into turmoil is a concern for us anymore. She is an eagle soaring. However, there is stress and uncertainty involved in making good and accurate decisions for her. I may be in a comfortable place with Ivey, but I am not in a comfortable place with my ability to make the right decisions for Ivey. Please be patient with me.

I hope you all do occasionally glimpse at Ivey’s sidebar and some of the other children out there. They have incredible moms. I would say they are all courageous women. More than likely I will never meet them in the real world, but they are very much apart of my word and Ivey’s world just through the computer.

The other day a mom left me a message on Ivey’s blog. She is trying to adopt a little boy named William. She is choosing to be a special needs mom. She has courage. I will leave you the link so that you may meet William too.
The Adoption of William

Every so often I try to give you a video update and pictures. Ivey is chugging right along these days. She has the whole choo-choo movement going on now and is beginning to pick up her arms and her legs. The way I see it, the hour glass is almost empty. She is about to be mobile. I think the biggest barrier between Ivey and mobility is the link that there are things out there. Once she makes the connection between sound and object, she will be on the prowl.

I have also posted a new version of Ivey is her rocker with her brothers. This is our 'progression' picture, all three sitting in the chair. When I look back through the rocking chair pictures it always makes me smile to see how much they have grown and new things they are doing. When I first started taking this picture, Ivey was tiny and the boys still looked like babies. Now the boys look like boys and Ivey takes up her own space. So here they are all smiles talking away - even Ivey. Notice that she has her finger in her trach so that she is making just as much (if not more) noise than the boys.

Ivey is doing great. Her eye is healing beautifully from her surgery. Have a great weekend!! gwen

almost there

Our little trooper made it through another surgery with great news. Her left eyelid has now been repositioned. It has a tiny bit of swelling and bruising. Her surgeon decided not to tweak her nose; that will come in a few years.

Ivey's bronch came back with great news. The restriction in her airway has improved. Her ENT sees no need for reconstructive surgery at this point. He has given the okay to start the process for removing the trach, which will take months. The next step in this process will be a visit to her pulmonologist.

Ivey's ENT also replaced the tubes in her ears. An ABR hearing screen was preformed. This test confirmed much of what we already know. Ivey has hearing loss and she tends to hear higher pitch than lower pitch. One ear has a pretty significant loss. The other had fluid behind it, so we will wait for 6 to 8 weeks and perform another hearing test. This will allow swelling to go down and get a more accurate reading. We do know that there is hearing loss in both ears and Ivey will need hearing aides in one or both ears.

After Ivey returned to the room from recovery she fussed for a few minutes, but within no time she was smiling again and has been since then. She has spent her day (Saturday) playing with her brothers. She is as happy as a lark and all she wants to do is play patty-cake over and over and over. Right now she is snuggled up and sleeping like an angel in her daddy's lap.

Ivey will go in for surgery in the morning at Scottish Rite. Both her cranio-facial surgeon and her ENT will perform procedures. There are several procedures on the docket, all of which are simple. Please keep Ivey in your prayers tomorrow. Will update as soon as possible.