Hooray for Ivey Elizabeth !!!!!!

Ivey did great this morning during surgery. Her cleft palate surgery was successful - no complications! She is in pain and becomes very agitated as the pain medication begins to wear off. Cuffs are on her elbows to prevent her from bending her arms and placing her hands in her mouth, which is her favorite thing to do. She will wear the cuffs for about two weeks. She is doing awesome and her color and sats look great!

More good news. Ivey's ENT did scope her airway and found that it is not as restricted as it was during the time of her lip surgery and tracheotomy. He thinks that time and growth may be all that is needed for her airway. Reconstructive surgery may not be necessary. However, she is much safer with the trach for now.

And for all of you who are trying to learn how to set up a feeding for Ivey, there is an added bonus. Her new button has Jejunal (J-tube) and Gastic (G-tube) marked on the button itself! Now you do not have to worry about which is which, only what goes where.

Ivey is sleeping peacefully right now, so is Matt. She is in her regular room on the floor (NO ICU's!!!) here at Scottish Rite.

Thank you all for your prayers. They have definitely been heard and answered! There is a sweet healthy little girl lying asleep right now because of them. We love you!

Happy Groundhog's Day! Did he see his shadow?

Gwen.

Are You Qualified?

Over the course of the past nine months I have heard all sorts of accounts that explain why Ivey is Ivey and why we got her. I have noticed that most Christians have an incredibly hard time accepting that difficult circumstances do arise, and an even harder time accepting that God 'let' them happen. The hardest is for Christians to comprehend that no amount of prayer or doing good deeds will change some things. Prayer does not necessarily have to end with change, maybe just acceptance.

That being said - You better believe that we pray around here. We are praying for a successful surgery this week and for her to heal quickly. Oh, we pray. We have accepted in our home that Ivey can not be 'fixed', mended in some ways, but not 'fixed'. Ivey will always be Ivey. Ivey Elizabeth Sirmans. She weighed 5 pounds 11 ounces at birth, and weighs 10 pounds 11 ounces nine months later. When I pray for Ivey, I do not pray that she will be someone other than the person she is at this very moment. I love Ivey, my Ivey, the one with the feeding tube, the trach, the conformers, the cleft lip and palate, the mental issues, the one who can not see. I do not have any regrets for who she is - none. (Before Ivey's lip surgery, I cried to my friend Martha that I did not want her face to change.) When I close my eyes, I can not envision her any other way, but the way she is. I can not image her taking a bottle or what color her eyes should be. If she were any other way, she would not be Ivey.

She does not need vision to 'see' me or Matt smile at her. She feels it with her hands. She hears Walker ask to pet her, and feels him when he lays his hands on her head like she were a puppy. She feels Knox when he holds her and wraps his little arms around her. To our family, there is nothing that really needs to be 'fixed'. When I pray to my God, I always thank him that I have my little girl-there are no specifications-except health.

I say all of this for two reasons. Ivey and I have gotten out a little more than normal in the past couple of weeks. It has been interesting to watch the faces of strangers and friends who have not ever seen Ivey or who have not seen her since she was trached. The ambush of the suction machine, the feeding pump, well, all of it can scare you out of your skin. We stay so enclosed within a small group of friends, and they are familiar with so many of Ivey's daily activities, that I forget that many things are extremely foreign for most.

Two, that same group of friends has taken the stance that they too are responsible for Ivey. At some point in this journey, they have all wanted to help, but on the same hand, admitted their fears and uncertainties. In my mind I have sat while looking at them and wondered, "Do you think I knew anything about this before now? I have been just as scared as you are, still am." But they get it. Ivey is Ivey. She is who they love. They have accepted that this is also their place in an unique circle. And when they pray, they pray with Ivey- not for who she could or should be.

None of us were called because we were qualified. We are qualified because we are called.

We are here - they are there

Here being St. Simons. Whoohoo!!!! Matt had a little conference, sooo, we both came down. We keep checking in with the grandparents - they are holding down the fort! Awesomely!!! (They remind us that they too had children and that it is possible for them to 'care' for ours..I remind them that they had two children 8 years apart, and we have three and that our three are within three years .....They never go for that one.)

And Sarah I haven't read but three pages of any of those books.

A big week is in store for Ms. Ivey. At the beginning of the week she is scheduled to weigh in with her pediatrician. Then she will visit her opthamologist for a check-up. Then on Friday she will go for her cleft palate surgery. During this surgery she will have a few other procedures to undergo while under anesthesia. The plastic surgery will repair the palate. The ENT (ear-nose-throat) surgeon will scope her airway to view the deformity. He will also perform another hearing screen. Then the GI (gastro aka stomach) surgeon will go in a switch her G-J tube for a 'button'. Pray that all goes well. This surgery should not be quite so scary this time because she has the trach.

Flashback to this past week. Ivey's J-tube managed to be pulled out twice, which meant two trips to Scottish Rite to radiology for replacement. It is a very simple procedure to replace the tube, but seriously, who wants to strap her to a table more than once? The problem seems to be a very simple one. She is small; therefore, the G-J tube hangs from her stomach down right between her feet. She can push the tube out if her foot pushes on it just the right way. Hopefully, the button will solve this problem.

I must go now - I must walk down to the beach to look out across the ocean.
(Don't worry, no need to be jealous, it is absolutly FREEZING here!!!!!)

The past three weeks have been very, well, I am not sure that a particular word can actually describe them, but Trying would be one word. Emotional another. Confusing a third. Draining a fourth. And finally, the past three weeks have finally found within them a sense of peace and resolve.

Acceptance would be the overlying theme of the past three weeks.

I often read a blog that I began reading in the first days that it was established, which was close to the same time of Ivey's birth. I read the blog because I found my own thoughts there at times. Our stories took very different paths. Often I read the post and completely ache for this family and send what I can only hope are words of encouragement and confirmation, other days I read the post out of complete fear of my own family. Today there is a post that once again feels like my very own thoughts, especially after the past three weeks. So take a moment and read HERE. One thing that Ivey has taught both me and Matt is stated in this blog so eloquently. No matter your pain, it can never be compared to another's pain. Never. He says - pain can not be measured or compared. Pain can only be experienced. So go now and read!

Daddy's Girl

Wal-Mart

This one’s for Gretchen.

What was I thinking this morning? The boys and I headed to Wal-Mart. Unless a limb is severed and band aids are needed, or there is absolutely zilch morsels of food left in the house, it is a place to be avoided at all costs with children. But still, Walker had a gift card from his birthday (in September), and time has been lean here lately, so I thought it would be a great idea (????) to go to Wal-Mart to let him pick out a treat just moments before lunch time. Thus, empty stomachs. Ugh. “Why this sounded like a good idea?”, I . can’t . quite . say.

(Ivey was here with a friend. She has yet to venture in to the petri dish of germs that reside in this one vicinity. Also, I still view her as a perfect little Angel, why tarnish her halo?)

Now, my trip to Wonderland - oops I mean Wal-Mart - was not much different than anyone else’s you see (or hear about) in Wal-mart. You would think that we, moms, would get a clue (or a sitter), and avoid this location at all costs when children are present. You would think. But for some reason, we, moms, have an innate gene that will not allow us to be beaten, so we continue the trips again and again and again. Our hopes are to eventually walk out of the Place bursting with the filling of victory. “Why?”, I . don’t . know.

Notice moms that the dads never go to Wal-Mart with the kiddos. Obviously, they are just smarter than we are, or they are just too afraid to confront defeat, so they avoid ‘It’ all together. Smart.

I will spare you the details of our TRIP. You have witnessed it a thousand times yourselves. We were the ones you pass -quickly - thinking to yourself while raising your eyebrows, “Why doesn’t that person do…blah….blah….blah. I would never allow my children to…blah…..blah….blah.“ (If you have toddlers you’ve been there, so, “yeah right”. ) No sarcasm intended. So my plan is to take action, do something about it (the trip). There are a few options here. One, I could keep attempting to take my normally well behaved children in hopes that they will continue being adorable upon crossing the threshold. Two, I could go alone. Three, when you see me in my house slippers, PJ bottoms, children with green runny noses (with much of it dried across their faces) -screaming- about - everything -, while I stand in the middle of the isle (screaming at the kiddos to stop -screaming-) with no thought of moving to one side so that you can walk down the isle too, I have caved to the masses of Wal-Mart.

A Day In The Life

Have you ever wondered what Ivey does all day? She keeps everyone one their toes that is one thing for sure. Her schedule (and I don't use the term loosely) is mundane and extremely strict; however, not one day is ever remotely the same. Our family is a 'fly-by-the-seat-of-our-pants-on-a-preplanned-trip'(everything is planned, but she never adheres to the plan). So, if you were to look at my computer, you would find a calendar strategically marked with appointments for Ivey, plans for the boys, events for Matt, times that friends will come over, and still, I am constantly scrambling at the last minute to make arrangements for everyone. It gets crazy over here.

So here is a glance at Ivey's strict, non-compromisable schedule:

*factor in alot of suctioning, replacing conformers and venting the Gtube

6 am meds (reglan/prevacid); canola oil; bolus feed

8 am trach meds (flovent/xopenex)

9 am brothers to school

10 am meds (reglan/phenobarbital); trach care; canola oil; bolus feed; nap

1 pm pick brothers up from school

2 pm meds (reglan); trach meds (xopenex); canola oil; bolus feed; nap (all children)

4 pm play with brothers

6 pm meds (reglan/prevacid); canola oil; bolus feed

8 pm trach meds (xopenex/flovent); get brothers to bed; bath; trach care

10 pm meds (reglan/phenobarb); canola oil; continual feed

2 am meds (reglan); trach meds (xopenex); canola oil

5:30 am end continual feed

(The canola oil is for calories to bring her up to her minimum daily caloric intake.)

No matter what goes on during the day, this schedule can not be strayed from....not for a moment. Ivey also does her physical therapy, speech therapy and playtime everyday. Oh, she also plays with her brothers. Don't forget that she goes to a doctor at least once a week (sometimes more) and she still sticks to her schedule.

Ivey also has FUN days like today. The boys were home from preschool - so - friends came over to play. At one point there were 2 adults, one 4 year old, two 3 year old, one 2 year old, two 18 month old and Ivey (8 months old) all here playing. That's a total of 7 children and 2 adults. It was crazy! Ivey has a wonderful, loving, full life!

Pillow Angel

Ivey weighed in at 10 pounds 6 ounces yesterday. This is her heaviest so far!! She has gained a whopping tenth of an ounce in 3 weeks and she has now surpassed her weight from the week of her lip surgery 3 months ago. Eventhough her weight gain is minimal, she looks really long. She is growing.

Ivey's palate surgery is scheduled for February 2nd back at Scottish Rite. Her cranio-facial surgeon said he would like to see her put some weight on before then, she is doing her best. Ivey will spend several days at Scottish Rite following her surgery; however, the doctor will not pin point exactly how many days. During her surgery Ivey's ENT will also be in the room. He will run another hearing screen on her. He will also scope down her throat above the trach and below it to take 'pictures'. The pictures will give him an idea to how and when he will approach the reconstructive surgery to the deformity to her airway. On the downside, the ENT said under normal conditions he likes for his patients to be near 20 pounds before he will perform the reconstruction. On the upside, he added that Ivey's case is unique and he will make his decision after he scopes her airway.

Since Ivey's surgery is coming up, I have been searching around reading about the surgery, etc. I ran across THIS article. Not once have Matt and I considered that Ivey should not have her cleft lip and palate surgery. There was never even a discussion. Correcting Ivey's lip and palate is pretty straight forward, no reason for debates. And, the lip/palate surgery does pose risks for Ivey. It is hard to comprehend what really happens within the walls of homes with special needs children. I believe unless you actually live in the home 24 hours a day, there is no way to truly understand, or place judgement on decisions. Ashley's parents have established a blog to explain the family's position and the choices that have been made for Ashley. Both pages are worth reading. Ashley's parent's blog

How To Stay Young

This email was sent to three other people, three special people. This email was sent from one very special person. I thought that I would share it with all of you. Loosing her is devastating. This is how she chose to live her life. This is how she wanted others to live their lives. Haley sent this on New Year's Eve.

We all need to read this one over and over until it becomes part of who we are!

HOW TO STAY YOUNG

1. Try everything twice. On Madams tombstone (of Whelan's and Madam) she said she wanted this epitaph: Tried everything twice...loved it both times!

2. Keep only cheerful friends. The grouches pull you down. (keep this in mind if you are one of those grouches;)

3. Keep learning: Learn more about the computer, crafts, gardening, whatever. Never let the brain get idle. "An idle mind is the devil's workshop." And the devil's name is Alzheimer's!

4. Enjoy the simple things.

5. Laugh often, long and loud. Laugh until you gasp for breath. And if you have a friend who makes you laugh, spend lots and lots of time with HIM/HER.

6. The tears happen: Endure, grieve, and move on. The only person who is with us our entire life, is ourselves and God. LIVE while you are alive.

7. Surround yourself with what you love: Whether it's family, pets, keepsakes, music, plants, hobbies, whatever. Your home is your refuge.

8. Cherish your health: If it is good, preserve it. If it is unstable, improve it. If it is beyond what you can improve, get help.

9. Don't take guilt trips. Take a trip to the mall, even to the next county, to a foreign country,but NOT to where the guilt is.

10. Tell the people you love that you love them, at every opportunity.

11. Forgive now those who made you cry. You might not get a second time. And if you don't send this to at least 4 people - who cares? But do share this with someone. Lost time can never be found.

Have a BEAUTIFUL day!!

Haley Cole Keith

Funeral arrangements have been made for Haley. Friends will be received from 5pm - 8pm on Saturday, January 6, 2006 at Jennings Funeral Home. The funeral will be at 2pm on Sunday, January 7, 2006 also at Jennings Funeral Home. Jennings is located on North Broad Street in Rome.

An education fund has been established at SunTrust Bank for Lindsey and Maggie. In lieu of flowers, it has been requested that a donation be made to the fund.

Thank You.

Haley Cole Keith

Sisters-In-Heart

January 4, 2007
Today we say good-bye. Haley passed away today. She is a beautiful wife, daughter, mother, sister and friend. She lives in our hearts and memories. She lives in the legacy of her two beautiful daughters.

We are all still standing at the edge of the valley - waiting.

Please pray for Robert, Lindsey, and Maggie. Please pray for Haley's parents during this confusing and difficult time. Lift them up in prayer.

g

Happy New Year.

I thought about listing two thousand and six leasons learned in this past year. But, I rethought the idea considering the amount of time it would take to type them- let alone read them..

Wow, we have finished off one interesting year. It started off with the typical resolutions, most of which were silly. As I have looked back over all of the posts, and some that I never actually posted; yet, I saved on my computer, I realize there is nothing to say about those moments that has not already been said. I sit here this afternoon -I think for the first time ever at the end of a year- Fulfilled.

We concluded the new year in the best manner possible. Last night we spent time with friends in our new home. One was an old friend. One was a new friend. The perfect ending to a miraculous year. The perfect beginning to an untold new year!