What was I just doing?

I have blog slacked this week.

It seems like between all that's going on with J's case, Christmas, getting my tubes tied, Lots of upcoming appts for Makily, licensing workers calling (yes they already want to start re-licensing us, GOD LORD) I ha vent had time to really get anything done. I know I am horribly distracted because I will walk across the house to get or do something and have NO IDEA what I just went to do by the time I get to where I am going.

I need some Ginko Biloba I think.

We are celebrating J's first birthday this weekend. It's not his real birthday but I didn't want to do it on a week day. I have not posted about his real birthday for privacy and confidentiality reasons.

I can't believe he is ONE though.

Is that crazy or what?

I'll post whatever pictures of his party that I can.

I am loving my freelance job with the newspaper. It's cool that they are letting me try so many different things. It's a bright spot.

I'm doing alright by the way. Hanging in there and taking things day by day. I don't know how to function any other way at this point. If I focus on all the bad things that could happen in the coming months I will be a walking anxiety attack (I did that for a day or so and hmmm...I didn't like it much). I'm not good to Makily or J if I can't think straight right?

So I am desperately trying to pull myself up by the boot straps and get it together.

Keep the prayers coming for Allen, Makily, for me and right now especially for our Little J.

Christmas Parade 2008

So yesterday was Ocala's Christmas Parade.

We go every year. I was determined we were going this year.....it will be J's first and Makily always has a great time.

We parked at Allen's mom's house that is right off the the Blvd. I drove her motorized scooter and Allen pushed the kids to our seats in the double stroller. I didn't feel up to walking all that way yet and so I borrowed Julie's scooter. It was great! LOLOL

Makily ate cotton candy WILLINGLY.

J stayed up way past his bed time and we all had a nice time.

Here are pics from the evening.

Makily and Brianna playing together
(red stuff on Makily's bib is cotton candy slobber!)


Cole saying "Hi" to Kily


Delaney and Makily playing


Daddy and Baby J Bird aka Santa Baby


Delaney cheesin for the camera


Me with a Glow Stick on my head
(holy cow my glasses need an adjustment, look how crooked LOLOL)


Mommy KISSES!


Deborah and Delaney


Herman and Micah


Daddy and Kily watching the parade


I am still doing good.

My body is a little "out of whack" right now but nothing serious. My belly button is itchy and irritated. I did great yesterday only had to take a pain pill once before the parade and then at bed time. I tried going without one today. I lasted until after church and was feeling really crummy so I took one and then had a long nap. Allen has been amazing. He has taken care of both the kids and me. He has not complained one bit. I am so blessed to have him.

More to come this week.

Nerve wracking stuff but really what else is new?

It's Done.

Yesterday morning I arrived at the hospital at 8:30 am.

My mom and both sisters were there waiting for Allen and I.

I am so lucky to have my incredibly supportive family.

They took me back did my vitals and then had me pee in a cup and get in a gown. They even gave me some bright teal grippy socks to wear!

Nothing like a hospital gown, BRIGHT teal socks, florescent lighting and a marshmallow hat to make you look SEXY!


You know I look hot! No you can't have my hat.


I kept noticing that my gown had an itchy tag inside it. It was really annoying me so I decided to inspect. Imagine my horror when I realized it was NOT a tag but someone else's old EKG lead stuck to the inside of my gown. Allen and I were both so grossed out.

It did look like it had been washed....but still.....

PUKE.

I called the nurse and showed her.......then I asked her if I had MRSA now. LOLOLOL She quickly got me another gown and explained that sometimes they just throw the gowns in the washer without inspecting that nothing is left sticking to them. Deborah reassured me those gowns are practically boiled in such hot water so I think I am safe from MRSA.

We waited in "pre-pre op" for an hour which was ANNOYING.

Once I got into pre-op though I was very tearful but numb and sad. Allen was sweet. I love him. The nurse came and did my IV and that's when my nerves started to get take over. Luckily the Anesthesiologist gave me some VERSAD and WOW that stuff works wonders.

Drugs are good...mmmmkay?!


I was in and out of it. I vaguely remember Dr. Johnson coming in and asking me if I knew what they were going to do and then asking if I knew why.

I just said "no more babies".

:-(

sigh

They came and took me into the OR about 20 minutes later. Thankfully I was still loopy. They put an oxygen mask on me. Dr. Johnson came in and they started push more Versad and they must have pushed it fast because IT FREAKED ME OUT. I kept telling them to take the mask off that something was wrong. I thought I was going deaf. My eyes were crossing and I couldnt focus. Dr. Johnson came over and was stroking my hand saying "It's okay Trish just breathe in and out". The nurse asked me if my ears were ringing and I said "No I think I am deaf take this off". Obviously I wasnt deaf but I couldnt explain what I was feeling since I was out of it. It felt like I was hanging my head out a moving car window and the wind was blowing HARD in my ears. Dr. Johnson was awesome and kept holding my head and saying "Your okay Trish just breathe honey".



The next thing I remember was waking up in post op hearing "bong bong bong" and trying to take a cannula off my face. The nurse had given me Dilauded when I first woke up (I don't remember this) because I said I was hurting. My o2 sats kept dropping because I kept falling asleep from it. For some reason the cannula made me mad and I remember thinking I just want it off.

I guess I am not a good patient.

The nurse put a mask on me and I kept drifting in and out. I would wake up to the "bonging" again and the nurse telling me to take deep breaths. I kept asking "Where is Allen, is Makily okay"? (I thought the bonging at first was MAKILY'S o2 sat dropping).

I finally woke up some and she put the cannula back on, I was not thrilled with it. I remember I kept telling her I'm sorry. lololol

She was very nice to me though and just kept saying "it's okay". She fed me ice chips and I started to wake up more.




They took me to post op and I sat there for a while drinking juice and water. Allen had to run to the school to pick Makily up so Deborah was waiting for me in Pre-op. It's kind of awesome having a sister that's a nurse by the way. She was great. Allen bought me a balloon and this doll. It's an old man with a shirt that says "If I flush will you go away". We all keep joking that the doll is Allen in 30 years. It also sings "Doncha" I have named him "Mr. Doncha". Makily loves him and thinks he's hilarious.



So my belly button is really sore. I have been laying as flat as I can to avoid gas pains in my shoulders. My right shoulder was bothering me last night but as long as I lay down it's okay. Allen has been great about giving me my pain meds (Percocet) when it's time so I know that's helping me. I had some peeing problems yesterday (too much info I know). That seems to have resolved as today goes on though.

Emotionally right now I am okay. I don't know if it's a "drug induced" okay or if it has not totally sunken in yet. For now though I know I made the right choice and I have a peace knowing that I won't accidentally bring a sick baby into the world. That I won't have to face the decisions I talked about before.

Thanks to everyone that left such touching comments. Many of them made me cry. I appreciated each one. I love that I have such a great blog family that prays and thinks of us. Please continue to pray that my resolve in this stays the same and that I don't find myself incredibly depressed about it a month from now.

Love
Trish

It's been nearly five years.

Since we heard the words:

"Balanced 11,22 Translocation".

Soon after that we were told we could have ANOTHER child with Emanuel Syndrome.

We were also informed we were at high risk for multiple miscarriages and still birth.

I was still reeling from Makily's diagnosis just a week before........and then this.

I remember that day so clearly.

Makily was still in the NICU.

In fact it was the same day she had her FIRST G tube placement surgery.

She was three weeks old. I was walking into the NICU to see Makily before her surgery. I can still smell the soap I had just washed my hands with. I vividly remember the feeling of panic when I saw the Geneticist walking towards me. I wanted him to just tell me....hurry up.......what are you going to say?

When he did tell me he was SHORT, not so sweet but to the point. I remember standing there watching him quickly walk away feeling like I had just been kicked in the chest.

I remember thinking to myself that I would never have another child. It was too painful on top of all the other crap going on and so I would push it as far back as I could.

When I mentioned it to anyone they would quickly say "Oh you shouldn't worry about that right now".

So I tried not to worry about it, I tried not to talk about it.

Deep down though, in my heart I knew Makily would be the first, last and only baby that grew in my tummy.

Allen and I have discussed every option and scenario there is as far as children are concerned. I have struggled and gone back and forth as far as what I want to do. The last year or so has given me some clarity.

I don't EVER want to get pregnant naturally EVER again. The thought of it nauseates me.

If I did get pregnant again I would have wait an agonizing six weeks or more to know if the baby was healthy or unbalanced.

Then what?

Then Allen and I have to face the decision of choosing to terminate or not?

Terminating a pregnancy is not really an option for us.

I don't judge those that have made the heart breaking choice to terminate a baby with a severe medical and developmental problem. Until you have been faced with that decision you do NOT know what you will do or how you would feel. That being said I do know my heart, I know my beliefs and when push comes to shove, I just don't think it's a decision I could make. I have the utmost respect for those who have had to brave this very scenario. I just don't have it in me and I don't feel like it is what God has planned for us.

It is because of all these reasons that tomorrow morning at 8:30 a.m. I am going in to have my tubes tied.

My heart is hurting tonight. I want it over with so I can move on and let go. I have to let go of the baby that never was.....and never will be. Makily is not the "perfect little girl" that I dreamed I was having back then but she is MORE THAN I EVER IMAGINED I COULD HAVE EVER WANTED OR NEEDED. Being her mother is the HARDEST and best thing I have ever done and so I am grateful for that. All that being said it still pains me to walk past the tutu's and ballet slippers in the store and know that Makily will never dance in them...except in my dreams....and believe me, I have those dreams. Those and dreams of her walking and talking...then when I wake up my I am so sad......

I don't know what is in our future, I can't even begin to guess. I never guessed that this would be my life and to be honest there are days when I still say "what the heck.......who's life is this"?

It's the life that God had planned for me though and while the last five years have been hard.....I wouldn't change any of it. I never would have dreamed that I would be a foster mother. I would never dream I could live through half of the things I have lived through since Makily was born.

I am stronger BECAUSE of her and that is the strength that is going to get me through this.

I love you Makily, more than I could ever tell you with words little girl.

Say a prayer for me and send positive thoughts to me tomorrow morning please.

Love
Trish

Makily's Bed.

I am beyond Grateful.

Makily's SLEEP SAFE BED arrived a week or so ago.

Life has been so chaotic lately that i haven't been able to post about it.

When it arrived I was SO excited. I don't know why but I was shocked that it was shipped in a HUGE semi trailer (see above photo)! Then when I saw it coming out of the truck I was shocked again because I just didn't expect it to be so big.

We got it into the house. My parents came over that night and Dad and Allen put it together in less than two hours. I was super impressed.

We had no bedding for it so Makily got a brand new comforter set and curtains.

It is PERFECT in every way. Makily will likely NEVER need a new bed the rest of her life. It is large enough that I can get in with her and snuggle her to sleep. The other night Allen and I both got in there with her and she was SOOOO HAPPY! She grin and giggled and had a big time. She laughs when we raise or lower the bed.

This bed is such a blessing to our family. I can't think SLEEP SAFE enough for their generosity to our family. Everyone that I tell the story too just stares at me in disbelief...until they see the bed.

Thank you so much again Mr. Joe Hallock and Mr. Gregg Weinshreider (owners of Sleep Safe Beds). You are proof that there still really are good people in the world. God will bless you greatly for what you have done for us.

Coming off the truck


Little J doing an inspection of the frame.


THE BED


Foot board


Headboard...notice the awesome IV pole for her pump? LOVE THIS!


The Princess in her bed


Her being silly


"Oh Mommy could you PLEASE go away"!


I sleep in Makily's bed with her when Allen is on the road. It's the perfect size. We were being goofy before bed time tonight. She was so giggly. I love that.


I look really stupid in this one but it cracks me up.


I love her

Loving, Shopping, Crying and Hysterical Laughing.

This Thanksgiving weekend has been a mixture of emotions.

We had a wonderful Turkey Day. We were all together, eating, talking and just having wonderful family time. The kids were happy and it was yet another holiday filled with priceless family memories. Only thing it was missing was my sister Elizabeth! :-( She had to work so she couldn't be there. She's a Paramedic and they just went through a transition to working as county employees rather than a private entity. Once the change went through she lost ALL of her seniority and can't ask for time off for at least six months and is on probation for the same amount of time.....oh and I did mention the pay cut she had to take?!

HOW WRONG IS THAT I ASK YOU!??!

Okay stepping off my soap box about that.

We were also missing my neice Tara, Nephew and his wife Hollie and daughter Haylee. They are all living in Hawaii (I am super jealous) so they couldnt be with us this year. :-(

Friday morning I got up at 4 am. Deborah (my sister) met me and my MIL here at the house and we braved Black Friday together as a TEAM! Deborah had not been in years and I must say she had a ball! All three of us got really great deals and thankfully we only had one mild "incident". A man walking furiously past me with a "Bed in a Bag" whacked me with said item and nearly knocked me down. I said "HOLY CRAP" and he turned around yelled "sorry" and continued on his mad shopping way!

I never thought I would be pummeled with a Bed in a Bag but hey I guess there is a first time for everything right?!

We came home around 10 am and I started to get myself and Makily ready to go to Carrie's memorial. It was emotional to say the least. There were so many people there and I know that would have really made Carrie feel great to see the countless lives she had touched. During the service they asked if anyone wanted to say something about Carrie. A few people stood up and I had this overwhelming feeling that I needed to get up and speak. I was nervous to at first because the last time I publicly spoke was when Makily received her NeuroSuit from FORE THE CHILDREN and I shook like a leaf and cried through most of what I said. I WAS SO EMBARRASSED that I was hesitant to stand up for Carrie.

I finally got over myself and did it anyway. I feel like she would have done the same for me had the circumstances been reversed.

I stood up and when I said my name EVERYONE in front of me turned around and I immediately thought "oh no, I think I changed my mind".

I am such a weinee sometimes.

I continued to speak and totally relaxed, for some reason my nerves went completely away as I spoke about Carrie and how she had helped me through a hard time in my life. When I got to the part about what the docs described Makily's life would be like at her birth I lost it. I had to take a few seconds to get myself back together. I finished explaining how Carrie and I were able to talk about the grief, loss and fear for our special children that we felt so deeply. That I am so sad I do not have that person I can connect with on that level anymore that lives RIGHT in my own town. It makes me so sad.

Please, please continue to pray for Carrie's family. Her kids are all so young. I am not sure how much little Logan or Brennan understand at this point. I do know that sweet Sarah probably totally gets it and my heart just aches for her. She was SO BEAUTIFUL and strong at the Memorial. I was very proud of her watching how gracefully she carried herself. That child is destined for great things.....I mean that from the bottom of my heart. There has been a trust fund established for Carrie's children. The monies collected will go towards paying for their college tuition. When they turn 18 they can choose to use the money for college. If they don't go to college their portion will be donated to the UNITED CEREBRAL PALSY FUND. Brennan's portion will automatically be donated to the UCP fund at 18. He is financially taken care of due to his birth injury so Sean knew that Carrie would want to make sure the money would go to help other children like sweet Brennan.

To donate to the Trust Fund you can go to ANY Bank Of America and say you want to donate to the:

CARRIE HAMMER CHILDREN'S COLLEGE FUND.

I know many people donate monies near the end of the year and this is TAX DEDUCTIBLE as it's a 501C. I can assure you this is a legitimate trust fund and the monies will be used for what it says it's for. I know sometimes you can never be sure.

Saturday morning I got up and Allen had bought "Lips". It's much like the "American Idol" for the Wii but it's the X-BOX version. I am not a singer but any stretch of the imagination (although Makily and J LOOOVE to hear Mamma sing :-). This game is fun and addicting though.

We invited Trishtwo and her hubby Justin, both my sisters, niece and nephew and my BIL Herman. Chontee came over too and brought little Brianna with her.

We drank a few Pina Colada's and sang like maniacs. I haven't laughed that hard in a LONG TIME. There really was only one of us that could sing (Deborah of course although I think Chontee can sing but she did it very quietly). So whenever one of the rest of us had the mic, let's just say it was SHEER entertainment at it's worst/best!?

At the end of the night my BIL Herman and Justin decided they would do "Bust A Move" by Young MC together. Now Justin had been tearing up the mic all night but this was a new thing for Herman. I HAD TO GET IT ON VIDEO AND YES I WILL BE SHARING IT RIGHT HERE! IT WAS A RIOT!

When everyone was packing up to go Delaney grabbed a mic and we let her play with it. The little booger was singing and dancing in circles. IT WAS SOOO CUTE I could barely stand it. I swear she is my sister Deborah all over again. I think she got your singing genes Deb!

So without further ado...the blackmail video of 2008

Justin Teal and Herman Bryant
performing
"Bust A Move"
by Young MC

With Special appearance by the girl who stole the show!:
Delaney Bryant

Make video montages at www.OneTrueMedia.com

BTW, THANKS for coming over and hanging out with us last night everyone. It's been a ROUGH couple of weeks and I needed a good laugh.

Love you all.

Gobble, Gobble!

I ate way too much Turkey.

I am so sleepy and feel way bloated!

Re-did my layout for Christmas!

Can you tell I couldn't wait to do it?

Getting up in the morning to go shopping on BLACK FRIDAY!

4:00 AM comes early so I need to finish blogging and go to bed.

We are going that early because I have to get back to the house by 10'ish to get ready for Carrie's memorial. It's in the afternoon. I am taking Makily. I hadn't decided if I should take her or not. Carrie's hubby called me yesterday wanted to make sure I was bringing Makily. He told me that he was afraid I might think it would be inappropriate to bring her...then he said IT IS TOTALLY APPROPRIATE ....that Carrie loved Makily and that kids like her and Brennan were her passion...I bit my lip, choked back a few tears and promised to bring Doodles with me.

Life is so hard.

I have so much to be THANKFUL FOR TODAY!

Please continue to keep The Hammer Family in your prayers.

Rest In Peace Carrie Callaway-Hammer

I can't believe I am posting ANOTHER post like this.

Last night I found out that a old friend of mine passed away.

I knew Carrie from High School.

She and I reconnected a couple of years ago. I saw a picture of her family at the therapists office. I noticed that her son had a trache and was shocked. I left my number there for her to call me and she did.

Carrie's son Brennan has cerebral palsy from complications at birth.

We had many things in common since our children had a lot of the same problems.

She LOVED Makily and it was cool to see someone meeting Makily for the first time and not even flinching at the G tube. I didn't have to explain ANYTHING to her....she just knew. That is the connection that special needs parents have. She could unhook and hook Makily up without a second thought....and I trusted and knew she could do it.

Carrie and I had a "falling out" a while back and in light of what has happened now it all seems so insignificant to me. I am reminded in her death what REALLY is important and what really is not. While she and I patched things up and we still had an amicable relationship, things werent the same. I thought of calling her last week because Makily's bed was on it's way. Brennan has a sleep safe and I was going to call her to see how hard it was to put together.

I wish I would have called her.

So at this point I am sure you are all wondering WHAT HAPPENED!?

Carrie, her husband Sean, and their three children Sarah (10), Brennan (6), and Logan (4) were on their way home Saturday night.....it was nearly midnight. A car was coming towards them in their lane......it got closer and closer until Sean had to swerve off the road to avoid a head on collision.

The van landed on it's side in a pond.

Now remember it's dark and cold.

They have three children in the van....one of which is unable to move and has a trache.

Somehow Sean and Carrie managed to get all three kids out of the van and out of the water. Brennan took some water in through his trache. This is dangerous as he can't clear his secretions very well and pond water in a trache can be life threatening.

Sean and Carrie decided to go back to the van to get Brennan's suction machine so they could clear out his lungs. Sean managed to get into the van and tried to get the suction machine. Water starting gushing in faster and faster and so Sean jumped back out of the van and at this point he realized Carrie was gone.

He and a passerby that had stopped searched furiously for her in the dark, cold pond water.

EMS arrived with lights and that is when they found Carrie floating in the water unresponsive.

She was coded at the hospital for more than an hour but unfortunately they were unable to get her back.

Carrie died doing what she always did, taking care of Brennan, trying to help her son.

I am just sick over it.

I am going to post a poem that Carrie had written for me about Makily and Brennan. She gave this to me for my birthday a few years back.

It meant so much to me then and means even more now.

(click on the picture here if you are unable to read the words)



This is Carrie holding Makily.
The little girl standing is Carrie's daughter Sarah.


Please pray for this family.

This is a link to the story in the paper.

TRAGIC ACCIDENT

Extraordinary People.

Welcome to the World
Hannah Hope

I have met many, many amazing families since starting out on our journey with Makily.

They all have touched me in one way or another. My sidebar really lists many awesome families that despite challenges and trial still keep going, even when times get harder and harder.

Today I want to talk about The Hughes Family.

I had met Andrea from another board for mom's of kids with reflux and G tubes. Andrea and I bonded over saliva and problems getting a drug called Robinul. I was having a horrible time getting it and she had gone through basically the same problem.

Amazing how spit can bring two people together eh?

Andrea's son Luke has CMS (Congenital Mysathenic Syndrome). He's three years old. He spent months in the NICU and deals with many of the same problems Makily does.

Andrea found out the she and her husband are both carrier for CMS.

She unexpectedly became pregnant.

Due to many issues including the risk of the baby having CMS, her pregnancy was considered high risk and so she was monitored closely. Baby looked great throughout the pregnancy and while they knew she could still have CMS they were optimistic that she would be healthy.

Andrea gave birth to a BEAUTIFUL baby girl last week.

Hannah Hope.

She is gorgeous.

The first pictures of Hannah worried me a bit because I immediately noticed she had oxygen and some other tubes and wires on her.

Well yesterday morning I was shocked to read the update on sweet Hannah.

Hannah thankfully was NOT born with CMS like Luke.





Hannah instead was born with Downs Syndrome.





It took me a moment to take it in as I read Andrea's words.

I sat dumbfounded, shaking my head in disbelief.

How is it that she avoided having CMS but instead was born with a different genetic syndrome?

What are the chances of that happening?

More importantly WHY would God allow this to happen to Andrea?

I felt the familiar anger creeping up in my heart that had plagued me in the weeks.....okay months after Makily was born.

I just don't understand.

I am not meant to either I guess.

I am reminded of this scripture over and over.

Psalm 139: 13-14 “For YOU created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful I know that full well.”

and also:

John 9: 1-4

And as Jesus passed by, he saw a man which was blind from his birth; and his disciples asked him, saying Master, who sinned this man or his parents that he was born blind? Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

I realize that God has a plan for Luke and Hannah's lives just as he has a plan for Makily's. I know that I have learned so many things from Makily and all these other families. I have witnessed miracles and I have grown as a person BECAUSE of Makily. That does not make the pain of her limitations less for me. There is an ache in my soul that will never go away for what Makily will never be...what she will never experience and that is incredibly hard to live with.

Today I am sad for Andrea that she has not only had to deal with many trials and pains with her Luke but that now she is given A NEW set of trials to manage.

That being said she will now be able to see all the wonderful things that Hannah will do. She will see the millions of lives she will touch BECAUSE of the uniqueness of her family's life. Her faith will minister to others and give other's hope when they feel there is none. I believed with all my heart that Andrea was called by God before this, NOW I KNOW for a fact that she is an extraordinary woman that God chose for this journey.

Andrea, I am sure you do NOT feel extraordinary right now honey. I am sure you are in a shock that many of us will NEVER experience. Although right now you feel weak I promise you, God is giving you strength you never knew you had. I admire you and your faith. I pray that God will send you comfort and understanding that surpasses our human minds. If anyone deserves that right now it is you honey.

I pray for Hannah's health, for her heart, her lungs, her little body. She is an extra special little girl who picked an extraordinary family to raise her.

She is a blessing sent from God.

I am praying for you all.

Please stop by Andrea's blog and see beautiful Hannah.

She will touch many and already has.

THE HUGHES FAMILY BLOG CLICK ME

Craniofacial Team Appointment.

I always feel weird when I say "Craniofacial Team". Every time I say it, I find myself visualizing a team of men wearing jersey's with jaws, lips, mouths, teeth and ears on them.

Anyway.

We had a appt with "The Team" today.

The kids played SO WELL in the waiting room. Allen was in charge of Little J and I hung with Doodles. At one point I told Allen if he got tired of chasing J to let me know and we could swap. He immediately said "oh okay let's swap". He hands me J, I grab a book to read to him, when I smell a familiar stench. Allen sees me make a face and busts out laughing. That's what I get for offering to swap babies. I get the stinky one. Just like a man eh?

I was SUPER impressed with the staff at the office. The head nurse came out and APOLOGIZED profusely for not getting us back at our scheduled appt time. They were down one room today so we got bumped out of the first batch of 8 am patients so we had to wait until almost nine to get into a room. While this wasn't what we had planned it was TOTALLY fine since they were so incredibly nice about it.

Since when does a doctor's office apologize for being behind AND THEN explain WHY they are behind?

TWO THUMBS UP TO ORLANDO'S CRANIOFACIAL TEAM.

Makily wore her big girl bows and we got TONS of compliments on how cute she was.

As always they find "something" that needs to be done to my kid.

*sigh*

First off the ENT on the team wants her to get a new set of tubes. I knew they were not functioning well but today he discovered they are totally out and Makily has fluid behind both eardrums. I am sure everything sounds like she is under water.

In the waiting room.



So I have to call her ENT for an appt to set up tubes.

She did so well the last time that I am not too terribly concerned. I just hate the sedation of it. She always scares the crap out of me but since she did so well last time I am sure it will be fine.

Do you like how I am trying to convince myself that I am not worried in the least? :-)

Daddy and J making Makily giggle!


The plastic surgeon said her mouth looks great, cleft repair is perfect (nothing like giving himself a patt on the back LOL). He did say that she is missing some bone in the front region on one side of her gums. I of course have never noticed this and I can't even see it (he said he can feel it and recognized it immediately). He said when she is "8ish" she will likely need a bone graft or that part of her gums could collapse. Sounds like fun. Anyway I am not even going to let myself think about it becuase it's years away and not doing any harm right now.

Our happy little patient.




I was REALLLLLY impressed with the dentist on the team. He and the orthodontist were very nice. He wants to get Makily in for x-rays of her jaw/gums/teeth etc. It's very common for ES kids to have any and all kinds of dental issues including missing adult teeth, gum and enamel problems etc etc. The x-rays will tell them what teeth she will have once the baby teeth fall out. The plastic surgeon seemed very convinced she would need braces when she is bigger. The dentist was not as sure and also feels like she will be 8 or 9 before her baby teeth even start falling out since she started teething so late (first tooth was not until she was 18 months old). He will do a cleaning the same day as the x-rays. I am not looking forward to that but he was not as worried as I. He said with developmentally delayed kids he just knows in advance he will need more time. He is going to allow us in the room with her so this will help. He said the discoloration I have noticed on a couple of her teeth is from being 100% g tube fed AND probably the enamel issue that most ES kids have. Hopefully the cleaning will take care of that for now.

In Memory.

My family always seems to amaze me.

My Mom, Dad and both my sisters all pull together when times get rough.

It's these rough times that always bring us even closer than we were before.

While I sometimes fight with my sisters, I think the world of both of them and I am so grateful they are in my life and I have them to lean on.

Today was Ning-A-Ning's funeral and as I sat next to my Dad, my arm around him I was overcome with pride. Pride for what a strong man he is and especially for what an amazing father he has always been to me.

My sister Deborah has sang since she really could talk. She used to sing EVERY Sunday in church and until today I had forgotten how much her voice touches me. She sang two songs at the funeral and to this day I get chills when I hear her sing. I miss hearing your beautiful voice Deborah. I included a few snippets of my sister singing during the funeral. I tried to figure out how to have it throughout the video but I am not that talented yet. I hope you enjoy hearing her as much as I do.

Rest In Peace Ning-A-Ning.

Make an on-line slide show at www.OneTrueMedia.com

Good-bye Ning-A-Ning.

In Memory of

Charlie Pettis Tillis

January 29, 1918 - November 16, 2008



My grandmother passed away this morning around 11:00 am.

We called her Ning-A Ning.

Sounds crazy I know.

My oldest cousin (and her first grandchild) called her that when he was little, we all guess he was trying to say "Nanny" but it came out Ning-A-Ning.

It stuck and she insisted that all the grand kids call her that from then on.

I had posted about her being in the hospital and having to have an amputation a few entries back. She never totally recovered from that. She stopped eating and for the last three days had refused to take ANY of her oral medications.

Yesterday they discussed discharging her to Hospice House. She was not getting better and the doctors just felt it was a matter of time. They had planned on transferring her today or tomorrow.

My sister Deborah went up last night and she didn't know who she was. She thought Deborah was the tech coming in to turn her and told her to leave. After a little convincing she seemed to understand it was Deborah.

Early this morning she started struggling to breathe. I got the call that she was not doing well and started to get the kids and myself ready. My sister called a bit later saying not to bring the kids but to get there as quickly as I could. It was then I knew things were very serious.

When I arrived she was having a rough time breathing.

Everyone in the room was teary eyed.

It was incredibly sad.

She looked terribly uncomfortable so my sister Deborah asked her if she was hurting. She told her "yes my whole body hurts". This is one of the last things she was able to say.

Deborah spoke with the nurses and doctors and they agreed they would give her some more pain meds.

It was horrible watching her struggle but what made it harder was seeing my father loosing his mother.

It was incredibly heart breaking.





She passed very quietly. We all we in the room with her, my Dad on one side and my aunt on the other. There were many tears but there is comfort in knowing she is no longer in pain.

She is better off then the rest of us.

Right now she is dancing in Heaven with my Grandfather, her daughter Lois that passed away at age two and her son that lived for a very short time after his birth some time in 1940. He had what we now believe to be Emanuel Syndrome. He shared many of the same conditions Makily was born with and so it gives me peace knowing she is with him and the rest of our family....perfect, peaceful and whole.



Please pray for our family as we mourn this loss.


Makily resting in Ning-A-Ning's arms

Pop Goes the Mic-Key......again.

Amber so saved us!!

THANK YOU AGAIN HONEY!

Tonight when Allen was getting ready to put Makily to bed he said "Trish come over here and look at her button". I looked at it and said "what, it's fine"? He said it had been sticking out really far a second ago. This happens from time to time with her button so I didn't think much of it. I said "well let's check and see how much water is in the balloon just to be safe". I check the water level....there is NO water in it at all.

sigh

We just got our shipment for the month from our home health supply company for Makily. I asked them last week when insurance was due to pay for another button. They said it wouldn't be until November 27th. When I had spoke with the lady with Mic-Key a month or so ago she said she would send me TWO replacements instead of one since we technically had two go bad. Well she sent one and I never got another. I don't know why either.

Well Amber had read my blog and told me she had a spare button she could send me. It is a smidge longer than what Makily usually takes but the width is the same. We put that in tonight. The old button has a hole in the stem. I would LOVE to know what the heck is causing Makily to pop all these buttons. The lady at the manufaterer said that Makily's meds are "all really hard on a button" but who knows. You would think that most G tube kids would be on some kind of medications.

I am hoping this one lasts long enough to get the one that insurance will pay for at the end of the month. I had some people from AMT contact me via my blog (they are Mic-Key's competition) and I will call them and see what I can do to try their button out.



I am just at the end of my rope.

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My grandmother (Dad's mom) has been in the hospital for several weeks. She originally went in for diarrhea, vomiting and dehydration and ended up having to have her leg amputated last week. It's been rough on her and the family. Please keep her in your prayers. She is stable and doing pretty well right now, she's 91 so they doctors are cautiously optimistic.

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We have court on Wednesday. I am A NERVOUS WRECK about it. Things supposedly are set and planned a certain way but at this point nothing surprises me. People have been waffling back and forth so it will be interesting to say the least.

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We took Makily and J to see Madagascar Two Sunday. THEY LOVED IT! Makily especially. Her Granny is taking her to see it AGAIN this weekend. She is such a spoiled booger! We had to take her to Dr. Pierre on Friday. The school called saying she was running a fever and congested. She has been "crackly" for a few weeks now. I took her in and her temp was fine and chest sounded a little crunchy but okay. We are doing breathing treatments and CPT. She has some fluid in her ears too so we have been keeping an eye on her. She came home from school the other day wearing an "Indian hat" she had made in class. It shocked me because she hates anything on her head. Mrs. Leslie said she wore it happily all day. It was so cute.....it even said "Squaw Makily" on it. So funny!

Goodbye Sweet Reesie.

I had posted a few entries back that little Reesie passed away last Thursday.

Saturday is her funeral. I wish I could be there.

I knew I would do an entry dedicated to her but I have struggled with my words and thoughts.

I had spoken to Reesie's mom Ashley a few times over the phone. She was so sweet and exactly the person I imagined she would be. I remember her saying that they just wanted to know they had done everything possible to help Reese. That she wanted her to be comfortable and happy.

I remember the first time I saw their blog. It took my breath away when I saw a picture of Reesie's tiny face. She had THE EXACT same skin tag on the SAME CHEEK as Makily did at birth.

Makily at four months


Reesie at one month (notice the matching skin tags?)


As I read I was astounded at Todd and Ashley's strong faith. It never seemed to waiver. It took me quite a while to get to the place I am at now with God. I knew immediatley that this was an incredible family with an equally incredible baby girl.



I have thought about Reese and her family all week. I wonder what it must have felt like to have to walk away from Reese after God had taken her home. The pain of that must be all consuming. A parent should NEVER have to bury their child. I thought about the panic and anguish I felt when Makily was having her seizure and nearly died. I remember thinking how I was not ready for her to go, that I wanted to hold her, kiss her, hear her laugh and see her smile one last time. Then I realize that Ashley and Todd must have felt all those same feelings.....but knew that Reesie's body was so damn tired. As a parent they did the most SELFLESS act in letting her go. Their dedication to Reese is to be admired.

Anytime one of our "chromosome 22'ers" dies it hits me like a TON of bricks.

When Payten passed two years ago I was heartbroken. We actually met her at the conference in 2006 and so I was floored that God had called her home.



It also is a HUGE slap of reality to all of our families. I don't know how long Makily will be here. Seeing another child slip away like this reminds me how incredibly fragile and complex our kids are.

Tomorrow is never promised to any of us.

I have hugged Makily even tighter and kissed her even more this week. I am so grateful for every second.

To the Kostjuk's your faith and resilence has amazed me. Your daughter was an angel on this earth. She was too perfect for this awful world. Her work here was done. Take comfort in knowing she is running and playing now. No more pain, no more struggles, she is perfect inside and out.

Sleep well Little Reesie, you are forever loved and missed.



Please click here to visit the Kostjuk's family blog to offer them words of condolences during this very difficult time.