Holy Guacamole.....Prayers have been answered.

Makily is being GIVEN a custom made for her, brand spanking new:

SLEEP SAFE BED

Remember now, this is the bed I have fought and begged for since February.

How did this happen you ask?

No it's not the insurance company, they still have not budged.

I am still so floored by this I don't even think it has completely sunk in.

As many people know I have been a member of a infertility/parenting board since 2001/2002. These women have walked the last four years with our family. They have been a huge source of support for us. When Makily was born I can't count how many boxes of preemie clothes and diapers these ladies sent to us. When she has been on death's door they have rallied together and sent care packages of gift cards, candy, movies.....things to help me keep myself sane.

I was very depressed when the Insurance company told me that Makily's bed was denied again. I sat on the floor crying and really just wanting to throw my hands up.....and give up. I had posted on the parenting board about how defeated I felt. That I was tired, I had tried everything, I had called everyone on the planet for help with no solution.

Unfortunately though, I can't give up, it's for Makily and so I have to continue fighting for her because SHE DESERVES and needs these things.

One of the owner's of the board and a close friend of mine Dj Aguilar was infuriated with all we have been through to get a bed for Makily.

She and all the other ladies on the board were racking their brains trying to figure out a solution for me....they could all tell that I was SPENT.

My friend Dj
(she's so going to kill me but is she hot or what?)


Dj sent a very touching heartfelt email (which by the way I had a hard time reading it through my tears) yesterday to the owners of Sleep Safe Beds. She basically detailed our story and how we have had to fight for ANY assistance and even then we are sometimes left with no help. That we have tried to get EVERY state funded insurance as a backup and were denied based on income OR because we have private insurance.

Dj received an email back this morning telling her that one of the owner's and his wife had been following my blog for quite a while now. They knew who Makily was and wanted to know what specifications we would need in a bed for her......then they said they wanted to GIVE Makily a bed.

That's right G-I-V-E!

They told Dj to have me call and just let them know what I needed down to the color of the bed and they would take care of it.

There are NO WORDS to describe the weight that lifted from my shoulders at that moment. I was blinded by happy tears.

I called them this afternoon and spoke with a sweet lady named Casey. We went over what all we needed and Makily should have her bed by Christmas. What a Christmas gift this will be! There were many upgrades and features that she willingly added for Makily. Without a second thought, whatever my baby needed they were giving it to her. They are even giving her a full size bed instead of a twin. It will grow with Makily and she will be able to use it for quite some time....I'll also be able to snuggle in with her!



All those months of crying, faxing, begging, writing letters and being denied were fixed in one email and one phone call.

I am speechless.

How do you thank someone for thinking enough of you to write a letter that sparks ANOTHER person to so generously hand over a piece of medical equipment that costs THOUSANDS and THOUSANDS of dollars?

I told Dj on the phone today that I don't feel worthy.

Saying Thank You just seems incredibly lame under circumstances like these.

I told Casey at Sleep Safe thank you so many times I think she probably thought I had lost my mind. I was rambling on and on, I just am floored at the amount of generosity being shown to my little girl.

To the owner's of Sleep Safe Beds, Joe Hallock and CEO Gregg Weinschreider I thank you from the bottom of my heart. That just does not seem like enough. I wish I could come there and hug both of you so tight. You are proof that there are still amazing people left in this crazy world. This has been such a source of stress for me for such a long time now and I really did not see an end in site. The last several weeks I would go into wake Makily up in the morning for school and immediately get angry. She would be in horrible positions in a toddler bed that was too small for her, that had a mattress that is made for an infant. Not being able to provide your child with something like A BED that you know they desperately need is incredibly heart breaking and upsetting.

You lifted that weight off my shoulders.

You ended that stress for me and I am so incredibly grateful.

THANK YOU, THANK YOU, THANK YOU!




***I have had a couple of people ask me for the email address for Sleep Safe Beds so they can offer their thanks for what they have done for our family.***


Here is their email address:

sleepsafebed@sleepsafebed.com

An entry full of negativity..with a little positive..hooray!

I fell off the Jenny Craig wagon this week. I don't just mean I fell off the wagon, I jumped off and bounced a few times.

Weigh in tomorrow will not be fun.

Dusting myself off and jumping back on the wagon though.

SIGH

My sister had a HORRIBLY sad weekend at work. She and I went walking Saturday morning after she had gotten off work. She told me about her awful night and we were both in tears through most of our walk. I am sure the other walkers thought we were insane. She works in the Nursery and NICU.....nuff said.

Allen left for work this morning and J has been in rare form all day because of it.

We are almost capped out of our insurance therapy monies for the year so we have now cut down to just private speech therapy. She gets PT and OT at school but she needs the private therapies too so the fact that we still have NO BACKUP insurance is really making me insane. HealthyKids/MediKids denied Makily based on the fact that she already had Private Insurance. Lovely. I am starting to just accept the fact there is NO help for us. Unless Allen and I legally separate or divorce OR unless we give legal custody of Makily to someone else.....there is not help for us. I just can't bring myself to do either of those things. I have called and emailed Senators, Governers and State Reps with no help. I need to talk to an attorney but I doubt even they could do anything for us.

We were denied AGAIN on Makily's sleep safe bed. I am so frustrated with that whole process I don't even know what to do. The letters from the pedi and myself were awesome and there is really no reason they should NOT buy the bed. The denial just said "item not a covered DME item". The bed they want her to have is a death trap for a million reasons all of which were explained in the appeal letter. I guess they don't really give a damn if Makily gets sandwiched in the metal railing and or suffocates. They don't care if she entangles herself in all her wiring and tubing in the rails. What's worse is they are not giving me any other alternative of what other bed they WILL pay for that she won't possibly strangle herself in. I am willing to look at other beds as long as it's something safe.

I called the insurance commissioner of Florida, explained the entire story, they told me to call the commissioner of Alabama (our insurance is BCBS of AL). I call the commissioner of AL and they tell me that I need to call Florida. I am not even kidding. I wish I was. I really am tired of all this crap. I ended up calling the insurance lady at Allen's work and she is going to see what she can do.

I'll appeal it one more time I guess.

On a bright note Makily is FINALLY getting casted for her AFO's at school tomorrow. I have called and called and their staffing issues are finally resolved.

Things are looking BACK in our favor as far as J is concerned but right now there are still many unknowns. I am dealing with it though.

I also am waiting for a packet from the Therapeutic Riding Association. They will do Hippotherapy with Makily but I have to get all these releases and paper work filled out. I believe it's free so that's definitely a plus.

Makily's last EEG came back NORMAL. No change in meds everything was fine. I am going to see if the Neuro will just use the CT Makily had in the ER from when she bumped her head for her "yearly" CT. That would be nice to not have to go through that again.

Awareness Spreading Like WILDFIRE.

I couldn't be more excited about this!

One of the most difficult things for me when Makily was diagnosed was when they told us there was no one else. We had no clue what to expect and I was MORTIFIED of the future.

I felt incredibly alone.

Times are changing!

Stephanie St.Pierre founder of chromosome 22 central (and I'm proud to say a close friend of mine) started a support group more than 10 years ago for families like ours. I can't say enough about her. She was the person I would email or call late at night and tell all my horrible thoughts and fears to when Makily was first diagnosed and everything was such a mess.

Here is what I am so excited about.

I had blogged earlier about a benefit being held in New York. The monies raised are going to go to help other families of children with chromosome 22 disorder to attend the conference next summer in Niagra Falls.

The benefit is being held tonight and it seems to have stirred up interest in Emanuel Syndrome.

This story aired on NY1 news last week sometime. It is about Dylan Rabinovich. His mother Melissa works with NY1 and helped to organized the benefit.

CLICK ME

Is little Dylan a doll baby or what?!

I wish I could squeeze his cheeks!

This is a video that Stephanie put together to show at the benefit. Makily is in there. Look for her.



I am so honored that my baby's angel face was shown to all these people.

Stephanie has told me many times this past year that instead of getting emails from new parents saying their child has "Partial Trisomy 11,22 aka supernumery der 11,22 syndrome" they are saying "Emanuel Syndrome". The name is getting out there, doctors are learning about it and that is so important. I am hoping that one day no parent will ever be told that there is no one else. That they will immediately be directed to Chromosome 22 Central where other families are that can help them. Other families that have been in there shoes before and are still here to talk about it. To give hope and support to them.

If you are interested in making a donation towards helping other families attend next summer's conference PLEASE PLEASE PLEASE visit this page:

CLICK ME TO DONATE

You will see several areas there to make personal donations. I urge you to give. I can't begin to tell you HOW AMAZING it was for me to meet other families with kids like Makily. It is almost a sin in my mind that a family in our situation would not be able to experience that due to financial constraints.

To learn more about Emanuel Syndrome and other chromosome 22 disorders please visit:

CHROMOSOME 22 CENTRAL

Stephanie St.Pierre and a few others were on the Today Show today. I missed it but if anyone finds the link to watch it please let me know.

Have you ever said something....

........intending for it to come out in a positive helpful way and it turns into something OPPOSITE of what you meant to say?

Then to top it off you realize you were also offensive?

I have.

I think the anonymous comment poster on my last entry meant to do that.

At least that is what my hope is.

I have this nagging corner of my brain though saying

"Why would they comment like that and remain anonymous if they really were trying to be positive and helpful"?

Things that make you go hmmmmmmmmmmmmm...................

I debated on whether or not to address the comment as so many addressed it for me either openly (Andrea and Deb, I love you guys) or by privately emailing me.

I am typically not one to keep quiet when someone challenges my faith especially when said person won't even reveal their name.

Besides, it's my blog and I'll do what I want.:

"GOD is in control. Not you, not J's bio parents, not any other human force. Just God. I hope you can believe that He loves you and take comfort in His control over your circumstances."

I KNOW that God is in control more than I could EVER explain. If Makily has taught me NOTHING it is that (and believe me the kid has taught me TONS). Don't "hope" for me to believe that God loves me but KNOW that I believe God loves me. I am comforted in the fact that he has control over my circumstances. That being said he has had control EACH AND EVERY TIME Makily has been on the brink of death and in UNIMAGINABLE pain. He has been in control every time she has struggled to take a breath, when the doctors over dosed her on narcotics and when she had a seizure that almost killed her.

God was in control of every moment of that.

Please understand though that I am human and watching my child suffer is one of the most painful things I have ever encountered. There are no words to describe that pain. It is a physical, moaning, aching pain from the depths of your soul. Knowing that NOTHING you can do will help your child is HUMBLING and heart breaking.

So while it is comforting knowing that God is in control of my life I also know that just because I want something to be a certain way does not necessarily mean it is what God has planned for our family. I didn't want Makily to be disabled or suffer like she has but God allowed that for the greater good. I believe God allows this things to happen to teach others lessons they

never would have learned any other way.

Knowing that, it is still difficult when your child is seizing in front of you and unable to breathe to think:

"Gee Lord this is grand, I thank you for taking the breath from Makily's lungs and making her body twitch uncontrollably so someone else will learn from her...I think I'll dance a jig of glee".

Some may be able to do that but I am not one of them.

"You just seem to be consumed by anxiety, anger, hurt and bitterness, and those things will tear you apart and make you miserable for the rest of your life if you don't find a way to let God work in your heart and give you true peace and strength (and yes, even joy)."

I won't lie their are days that I am CONSUMED by anxiety, anger, hurt and bitterness. Those days have become few and far between. I admit when Makily is suffering or when Little J's future is threatened, my heart cries out and I do feel anxious. I don't think that means I don't trust God. I doubt that any Christian in my situation wouldn't have days they feel like that. HELL, I doubt that ANY PERSON NOT in my situation would not have days like that. I was very angry and bitter at God when Makily was born. In fact I have been brutally honest about that here in my blog so other families in my shoes will hopefully read my words and KNOW they are "normal" and not alone.

I hated God.

I cursed him.

I envisioned him in Heaven laughing at me.

God was with me the day Makily was diagnosed. He had been preparing me for it for years but really in the days, weeks, hours and even minutes before they told us. He was there when I laid on the floor in a pumping room at Shands with my face in a pillow screaming "HELP ME GOD".

I did feel abandoned.

I continued to cry out to him though because deep down my faith was still there, but my HUMAN HEART was so overwhelmed with grief that it was buried.

I AM happy.

I am joyful and I am far from miserable, in fact if you ask anyone that knows me personally, I can almost guarantee you they would tell you that I am loads of fun!

I love my life, I wouldn't change ANY of it.

To some that may sound totally insane but I am who I am today because of all these things.

I kind of like me.

"You talk about trusting God, but it's obvious that you have a big chip on your shoulder where He's concerned.

You're still angry and distrustful of Him because of Makily's condition, and every little thing that doesn't go your way is just more evidence, in your mind, that He is letting you down or doesn't care about you."

I don't agree with any of this statement (and it's rather bold to tell me what is in my mind and heart and what my relationship with God is...especially when you aren't bold enough to say who you are). I also would like to let you know that in saying that in the manner you did, you TOTALLY turned me off to your comment.

There are positive ways to say certain things to people and telling someone they have a "chip" on their shoulder is not a good way to have them be receptive to anything else you have to say.

In addition by saying: "every little thing that does not go your way" belittles the struggles I live on a daily basis.

My mother can tell someone to "go to hell" and she makes them want to run and pack their bags because of the manner in which she says it. In reaching out to hurting people and trying to lead others to Christ I recommend this is something you learn to do yourself.

I do not have a chip on my shoulder where God is concerned. I am humbled that God would give Makily to me to take care of. One of his most precious and innocent souls has been placed in my hands. While I am honored that God has entrusted that to me........it is one of the hardest things I have EVER done. It is also one of the most amazing and rewarding things I have ever done. I am not angry at him or distrustful. As I stated previously I was BOTH of those things for a long time..... It's hard to just let go when every week your child is struggling to do simple things like breathe and eat. It's hard to not be upset and angry when you live in a hospital for weeks a time being treated horribly. I trust the Lord but that does not mean I am not fearful of what he has in store for me or for my daughter. You did not live the life I lived the first year of Makily's life. IT WAS MY OWN private, lonely slice of hell on earth. Even still IT WAS GOD'S PLAN FOR ME TO LIVE THROUGH THAT PRIVATE HELL. I am fearful of what is to come, but I trust and KNOW that whatever is in my future that it IS in God's will. It may hurt like hell and I may have to beg for his mercy.....but I will know it is what he had planned for me. I believe there is a reason for EVERYTHING. I realize that I will NEVER be able to understand why God allows things to take place because I can't even begin to wrap my human brain around what he has planned.

I trust the Lord. I do. That does not mean that if J goes home that I will be able to stand by graciously saying "Thank you Lord for taking this child from me and placing him with people that are not able to give him what he needs and that will likely neglect him, I will not worry about it at all because I know this was your plan".

I know I did not give birth to J but believe me, I love him like I did. In my heart he is MY SON and to Little J I AM THE ONLY MOTHER HE HAS EVER KNOWN.

So imagine having your child torn from you.

Is your faith so strong that you would not question God or be completely heart broken over it?

I love the Lord and I know he loves me. I know he has walked this HARD road with our family and he will continue to. He knows my heart. He listens to me giving him all these things 100 times a day....just to take them back again. He is sitting next to me in church on Sunday when I am clutching Makily in my arms, sobbing for him to heal her, then weeping because I feel guilty in asking him to do something that likely is NOT in his plan.

He understands why I can't give it to him and just leave it.....and that is why he continues to give me these trials.

To teach me patience.

I am learning...but I am only human and I have a long way to go.

I started this blog as a diary, an outlet......IT IS MY THERAPY.

My hope is that other parents of special needs children will read this and say "I get her". I pray that a parent of a newborn Emanuel Syndrome child will come here in their fear and desperation and see that YES it's hard but you will smile again.

I pray that other foster parents come here and read a familiarity in their life and know that they are not alone. That their feelings of unconditional love for these neglected and abused children is AMAZING and that their frustrations with "the system" are founded.

So to the person that posted the anonymous comment I thank you. I do believe in my heart you meant well but you are what Andrea called a "well intentioned Christian". The fastest way to turn a person away from God is to judge them. I feel like you judged me without really knowing all the circumstances in my life and probably missing all the entries where I myself said all the things you "preached" to me.

Next time, say who you are.

God Bless.

Anxiety.

So Makily's little noggin is looking better. The bruise has turned from blue/purple to yellowish.

She has been happy as a clam and you would never know that anything had happened by the way she acts.

I took her and J to Walmart last week. I always have an issue with how to carry both of them in the store without the double stroller. If I use the stroller I can't push a cart obviously. I ended up using one of those for older kids (ya know the carts that look like a bus!) and it worked great....until Makily fell asleep sitting up. I finished shopping quickly while holding her head up! Everyone that saw her went on and on about how cute and sleepy she was :-)




J has started grabbing EVERYTHING within arms reach. When we go shopping he is Mr. Octopus Man. I caught him doing this at TJ Maxx the other day.
Frightening that he already is grabbing at bra's!




The anxiety about all that's happening with J's case is totally overwhelming me right now. Saturday I literally laid in my bed for a while just thinking about everything that was going on until I felt sick. I forced myself to get up and go for a "wogg" because that is the only thing that gets me out of that funk. Yesterday I had an attack in Walmart of all places. I was thinking about how if J's Dad gets him back that we will have to cut contact. Just typing that hurts. It will not be fair to J to have us in and out of his life while trying to bond with his Dad. He is going to be confused enough. I was thinking of the letter I would write to him about how much we love him and saying "goodbye". I suddenly felt like the wind had been knocked out of me and I had to stop thinking about it. I hate that feeling.

All that being said nothing is certain about what is going to happen with Little J. It's up and down and back and forth as always. I pondered my conversation with his Dad the entire weekend and I took some control and did something about it. Part of the problem in this situation is that I have ZERO control. I am having to leave things in others hands and it makes me crazy. I have a hard time depending on other people that are NOT family members. Since Makily was born I have been burned so many times that I just have this mind set "if anything is going to get done I have to do it myself". I CAN'T do things myself here because then it looks like I am a meddling foster mother that does not support reunification. I TOTALLY do support reunification IF it is done properly and the bio parent truly has "fixed" the problem. When I know first hand they have not it's hard to smile, nod and pretend like I think it's a good idea for the kid to go home. I have become very good at pretending now. I told my mom that I need a freaking academy award for the act I am putting on.

I realize that in taking control and doing what I did yesterday could totally blow up in my face. I have to know that I did EVERYTHING I was supposed to do to protect J. If I sat back and did nothing and something horrible happened to him later on down the road because I was afraid of what might happen TO ME then I would never forgive myself.

In the end ALL THAT MATTERS is that he is safe, well cared for and most of all happy and loved. If that is with another family I will have to deal with it, it will hurt but I can live with it as long as I know he is safe.

Friday: Two For One at the Hospital.

Yesterday morning after I dropped Makily off for school my sister Deborah called me. My nephew Micah had been fighting a NASTY stomach bug all week. He had not eaten since Tuesday morning and was not even able to keep sips of water down. Deborah weighed him Friday morning and he had lost 7 pounds in a week. She asked if I could come down to Dr. Pierre's office to help her with Delaney (my niece) as she was sure they may have to do some things to Micah and it would be hard with both kids.

Little Micah


I met her at the doctor's office and Micah looked awful. His little face was all sunken in and he was NOT acting like his CRAZY active self. Dr. Pierre looked at Micah and almost immediately said he needed to be admitted for IV fluids since he was so dehydrated.

I follow Deborah to the hospital with Little J in tow. We circle the ENTIRE parking lot and there is NO WHERE to park. Deborah drove around to another parking area off to the side and we parked there. We had the double stroller for Delaney and J. We strap them both in and realize there is no ramp only stairs up to the hospital. We are trapped. First we think maybe we can get the stroller up the stairs but that was NOT going to work. They were too steep and Deborah had to carry Micah he was so weak. So we opt to push the stroller up this grassy hill from hell. Now imagine Deborah is carrying 38 pound Micah who is sporting his nice wrapped IV arm. I am pushing both babies in the double stroller with about 800 bags on it. Deborah gets in front of the stroller and pulls while balancing herself and Micah while I push from behind the stroller. I am looking down while pushing when I notice that we stop. I look up and Deborah is sitting on the ground in front of the stroller.

She fell.

Micah squats down on the ground next to her while I am holding the stroller with a death grip to keep both babies from falling down the hill.

Delaney starts yelling:

"Mamma, YOU FELL.....MAMMA YOU FELL"

Delaney


Deborah and I both become hysterical as at that moment it was either laugh or cry.

We opted to laugh.

We finally get into the hospital where Deborah had to lug Micah back and forth between the peds unit and admitting. The peds unit would not ask admitting to come down there (even though I asked them to) and of course no one offered us a wheelchair. Lovely. We trek back down to admitting where poor Micah keeps begging me for some Tea.

We finally get into his room and Delaney is DONE with the day. I don't blame her. She kept saying "I want hommie". Which means "I want you to hold me". It's incredibly cute but with all that was going on no one could hold her which made for an unhappy Delaney. J has now started screaming when he is happy and this scares the crap out of Delaney.

She starts to shake and then cries. :-(

This was so NOT any one's day.

Micah gets into his room and settled in. I dash to the school to pick Makily up. I come home with her and do some dishes while the kids watched TV and played. I decided to feed Little J. He ate TWO things of baby food and half my yogurt. He was a MESS. Makily was on the love seat and kept wiggling herself upside down. She enjoys watching TV like that, I don't know why but she always has. I had let her do it for a while because well it's funny and makes her so happy and giggly. I was headed to J's room to change his diaper and decided to sit Makily up right because I was afraid she was going to fall. I sat her up and went to change J. Changing him at this age is like wrestling an alligator. He squirms, twists, turns and tries desperately to crawl away. Halfway through wrestling with him I hear a "THUD" and then SCREAMS.

I tear into the living room and Makily is on the floor screaming and crying. I pick her up and rock her. I am looking her over for any bumps or bruising. I look at her forehead and start to panic. Before my eyes she is developing the BIGGEST goose egg EVER right above her left eye.

It's already bruising.

I am starting to panic.

Somehow I throw everything in the car, grab both kids and head to the ER. I call Allen and my mom and tell them. Allen calls his mom to keep J. I dropped J off to Granny on the way.

We get to the ER and they triage her. I go through the entire medical history, they do her vitals. They suggested we go next door to Childrens Express as we would be seen faster. I advised them I was not comfortable with that due to past experiences and they said that was okay, they understood. They said to have a seat in the lobby again and if Makily had a seizure, vomited, started acting strange to let them know immediately. We sat out front for about 15 minutes when Makily started to get VERY agitated. I thought maybe she was hungry so I hooked up her to the pump. This didn't help so we moved so she could see the TV. She became more and more upset when she started having what I can only call an "episode". She has done this a handful of times in the past and it scares me the crap out of me every time. She became hysterical, she stood straight up ON MY LAP on her own while screaming and squinting her eyes. Then she rubbed her face frantically and her nose began to bleed. My mom and I rushed to the triage door with her doing this and they brought us back. There were a few techs standing there watching and a nurse that had not been back there before.

We'll call her Nurse Ratchet. :-)

The techs were incredibly nice and were giving me gauze to try and wipe up the blood, Makily was still screaming and I had blood on my shirt and it was all over her face. She began to calm down when Nurse Ratchet and I had the following confrontation.

Nurse Ratchet: You know they could see you much faster at Children's Express

Me: I know that but I am not comfortable going over there.

Nurse Ratchet: Well that's really where she needs to be seen because that is where the pediatrician's are and she needs a pediatrician.

***MALE TECH WALKS UP AND SAYS THEY WILL HAVE A ROOM READY FOR MAKILY IN TWO MINUTES NO NEED TO GO TO CHILDREN'S EXPRESS then he walks away**

Nurse Ratchet: It would still be better for you to go there since they are pediatricians and we don't have a ped doctor here.

Me: I understand that but the last time I went there I literally had to SPELL out my daughter's past surgeries to the nurse. Furthermore the doctor put an NG tube in her nose that literally ended at her cheek. When I told him it was too short he said that "the book" said that was the length she needed. She rubbed her face and pulled at it until it came out almost immediately. Plus if she needs an MRI or CT which SHE WILL they are just going to send her right back here (via ambulance literally across the street) because they can't do that THERE!

Nurse Ratchet:
*rolls eyes and gives me a look of sarcasm*
(not a good idea by the way)
What was the doctor's name?

Me: What? I don't remember.

Nurse Ratchet: (tone DRIPPING with condescend)
Well in the future you should probably try and remember a doctor's name if you don't like him.

Me: Excuse me!? My daughter has about 12 specialists.........

(interrupting)
Nurse Ratchet: I know, I know I saw her record.....

Me: Okay so you know she has a million medical problems and several specialists. So for me to remember ONE insignificant doctor's name that does not know the appropriate length for an NG tube is not on my top list of names to remember.

Nurse Ratchet: You don't have to get rude with me, I'm just trying to help.....

Me: Oh give me a break you aren't trying to help (I'm crying by this point which pissed me off even more) "you should remember his name" what good would that do me in this situation?

Nurse Ratchet: UGH this is what I get when I try to help you......UGGGGGH
(then the bitch stormed off).

Now seriously even if I would have remembered the moron doctors name.....what good would that have done for me? I would have gone to Children's Express and said "Oh yeah that's the DOCTOR I am not comfortable with".

I should probably say I do not really think the doctor at Children's Express is a moron. In their defense Makily is complex, rare and medically intimidating. They are used to treating broken bones, the flu, a cold, pneumonia....normal kids......not kids like Makily.

Which is WHY I went to the regular ER.

I asked for the charge nurse and told her about what a bitch Nurse Ratchet was. Some where in this time when I was loosing it my mom called good ole Dr. Pierre and told her what was going on. Dr. Pierre in turn called the ER, spoke with one of the docs there, explained how complex Doodles is and that she DID NOT want her over at Children's Express.

I love Dr. Pierre. :-)

We got back into a room, sat for a while. They ordered a CT. My mom rocked her til she fell asleep and we took her for the CT. She woke up as soon as I put her on the table. They put her in the machine and there is this thing that spins above your head. Makily stared up at it while giggling and clapping her hands. Not really what we wanted. The goal was for her to be still and fall asleep! She would not stop clapping and laughing at the spinning thing. She is such a hoot. I just love her crazy self. Finally they pulled her out, taped her head down (she did not appreciate this) and within a minute she dozed off. They got the pictures they needed.

Her CT was fine. Her noggin is all in tact.

HUGE SIGH OF RELIEF.

I picked J up from Granny and came home.

When I arrived I realized that I had left the front door WIDE OPEN.

*sigh*

I left both babies in the van and did a walk through of the house to make sure no one was here. I am not sure what I would have done had someone been in the house. "Keyed" them to death maybe? God knows I wouldn't have been able to get to the gun as it and the ammo are in two separate locked cases with the keys in another location per our agencies standards. I would have had to tell the burglar to hold on while I get all of my supplies to shoot him with.

Luckily there were no burglars in the house...just a few moths that I am determined to get out today. Makily's head looks much better. She no longer has a golf ball sized protrusion from her forehead but it is bruised pretty bad.






Oh I almost forgot (don't know how) that all this happened in the wake of a strange, upsetting and disturbing phone call with J's bio Dad.

Thursday I spoke with him in length and I was/am more confused and upset than I ever have been since this case started. In fact as I type these words I can feel my heart pounding in my throat. I am pretty sure he was drinking during most of the conversation as he slurred his speech and I had to ask him to repeat himself many times. He told me things that have made me even angrier at the system. People that are supposed to be in this FOR THE CHILDREN lying just to make a buck. It's sickening and again, I am not sure if anything will ever be done about it. What's worse is that if nothing is done it's almost certain that J will go home with him and he has blatantly told me he knows he can't be what he needs to be. I am just sick over it. He was contradictory throughout the conversation which I refuse to call him on because I want to keep a positive relationship with him.

As always the one person that has stayed on top of things in this case is on it and I pray that she is listened to and her advice is followed.

Please continue to pray for the safety and future of my baby boy.

I am very afraid.

My heart is pounding.

Packed Schedule and Mug Diving.

Makily is a busy gal.

Monday she had OT at school and then OT and PT after school.

Tuesday she had speech at school and then speech again after school.

Today she had PT at school.

My day today was a blur. Here's how it went.

6:00am: alarm goes off...I hit snooze.

6:30am: I jump up realizing I have to get ready AND FAST.

7:15am: I leave the house after getting Makily bathed, dressed, packed for school, waking J, changing his diaper and making a bottle "to go" for him. Oh yeah and I threw on the closest shirt and shorts I could find.

7:40: Drop Makily off at school.

8:00: Call Health Dept to set up J's well check...fight with them because I have not set his "primary care provider". They set appt and give me number to Medicaid to set provider.

8:10: Call Medicaid SIT ON HOLD FOR 20 FRIGGIN MINUTES. They tell me that my name is not anywhere on J's "record" and they won't tell me anything OR set anything for him. ACK! I argue back and forth and they tell me to call DCF and have them add my name.

8:40: Called DCF/J's caseworker leave long detailed message to PLEASE add my name so the jerks at Medicaid will let me set his primary care provider!

8:45: Arrive at Granny's house, give J to Granny

9:05: Start Wogging

9:35: Finish Wogging, get J, jump in van to head home.

9:45: Put J in crib for (short)nap, RUN to take shower, put hair in Turbie Twist

10:00: Give J a quick bath, dress and brush his hair, wrestle with him like he's an alligator to put his dang shoes on.

10:20: blow dry my hair, throw on clothes run out of house with J on hip while sliding my shoes on.

10:40 Jenny Craig, this took forever as the guy before me LAGGED and so they were running behind. (lost half a pound this week. it's a loss so I should be happy right?)

11:15: Dash to van to get to well check appt for J

11:35: Arrive with J 5 mins late

11:45: Fight with the lady at the Health Dept about why I still dont have PCP set

1:30: Leave Health Dept after well check.

1:35: Wait in car line to pick up Makily Oh joy, car line.

2:20: Pick Makily up, call CMS about loaner wheelchair as the kid kart is TOOO small and now falling apart and insurance is still fighting about her new wheelchair. Ask CMS about where the heck to get new AFO's casted because the place I always go and HAD AN APPT FOR ON THE 12TH (and they no showed for, they were supposed to come to the school) has no one to cast because their person had a death in the family.

2:35: Leave message for licensing lady to change appt to Monday instead of Friday because I really have too much to do on Friday than to sit here and discuss my locked medication and fire escape route

I AM FREAKING TIRED.

I have been lazy for the last couple of hours though. I STILL need to do a load of laundry, print a few pics of J and write a letter for bio Dad for visitation tomorrow, bathe both kids, do Makily's night night meds, set, fill and hook her up to her pump, rock J to sleep and read Makily "God gave us you".

All this and that has/will be done with THIS on my hip:



I have cropped much of this picture for fear that the site of my sexy cellulite and stretch marks would send my readers away screaming "I'm blind, I'm blind!"

This bruise is FIVE inches long and two inches wide.

Seriously?

Long story short I basically twisted my ankle and started to fall. I made a feeble attempt at catching myself by grabbing wildly at the air. My flailing arms knocked a mug off the table. I landed ON TOP of the mug on my side and that hip took about 90% of the blow. Thank God I was at my house and not out in public when I made this graceful "mug dive".

This is also my "baby carrying" hip...of course.

I must ask you this:

Who the heck falls ON TOP OF A MUG that leaves a bruise that looks like they were in a car accident !?

Me....only me.

My Dad suggested I had ruptured my spleen and was bleeding to death last night, a little dramatic eh?

I have to go put a screaming baby to sleep, he just wiped boogers on the back of my shirt.

Pictures and AN AWARD!

FosterMommy from PostCards From Insanity had nominated me for this award....a month or more ago! I have been blogging like crazy lately and just hadn't been able to post about it. You should SO visit her blog. I check it every day and I am either left HYSTERICALLY laughing or shaking my head in anger...sometimes BOTH. She really tells it like it is in the Foster Care world and I LOVE IT!

HERE IS MY AWARD:

It's sparkly, I LIKE IT.

So I am nominating MICHELLE at DAILY GRIND GONE MAD for the same award.

Girl you deserve it.

Your blog is yet another that I can not only relate too BUT I also receive all kinds of comic relief from it.

All that being said....here's some pics from our day today!

Doodles sweet hand wearing bracelet by Elizabeth (aka Liz) at CHERISHED MOMENTS DESIGNS. Thanks again Liz, it's beautiful!






BEAUTIFUL combs also by Liz:



THE Princess


A Cheesin' Princess

Just being her sweet self:


How could you NOT just adore this kid?


Little J standing in front of the "Horses on the Square".
We live in Horse country here and these horses are all over prominent places in town.

I love this kid.

I REALLY wish I could show his face.
He is an absolute doll.
These are a couple of my new favorite pics of him and I.





Enjoy the rest of your weekend.

EEG.

Yesterday I took Makily to Orlando for her "regular" EEG. She has to have one every six months. It's just to make sure there is no seizure activity that we are missing.

I didn't have anyone to keep J and everyone else had to either work, had a doctor's appt or their own kids with them so I went alone with both babies.

BOY THAT WAS A TRIP!

The ride there was not that bad until I got into Orlando. For some reason EVERY STINKING time we go to Neuro I get lost. It's always a fiasco but I was determined to get there in one easy trip.

Didn't happen.

I missed the exit, then took the wrong exit, then I drove and drove on the wrong exit thinking I would eventually find my way. I finally realized that was not working and got back on I-4. I ended up being 15 minutes late because of getting lost but they did the EEG anyway and thankfully did not give me a hard time. I called them in my state of confusion and let them know ahead of time that I was not going to be on time.

Makily was A PEACH for the guy that set her up. Usually she acts like a MANIAC when you put ANYTHING on her head. When we walked in the room, the guy turned on "Toy Story" and that was all Makily needed. She didn't give him one tiny bit of a problem. Little J was really good during this time too. He stayed in the stroller and played with Makily's shoes and his toy.

Then they started the EEG. The did the "flashing lights" in her face part and she laughed. She even tried to move the light out of her face a couple of times. Once that part was over we turned off the movie and the lights to get her to go to sleep. This is when Little J became a MANIAC. He wanted to play with every wire, all the lights, the computer and anything else he could get his tiny hands on. When he realized Mamma was NOT having that he decided he would sit on the floor and slap his belly over and over while HYSTERICALLY laughing. Typically I find this SO FUNNY and I laugh with him but when you have another kid in the room wired up to launch a shuttle and trying to get them to sleep, it's not funny. The EEG tech was very nice and even picked J up and played with him. Makily did sleep for about 10-15 minutes so they got all the information on the EEG that they needed. The only part she screamed for was when he took all the leads off her head. She had total crazy bed head once we were done.

Here's a video of the EEG process yesterday.

Make video montages at www.OneTrueMedia.com

When we got home THANKFULLY there was a package from UPS. IT WAS HER REPLACEMENT Mic-Key from the manufacturer. I put it in last night while she slept and she didn't even flinch. What a contrast that was to Monday night's fiasco. She finally got to go to school today and was very happy when I put her in the van to take her. I kept her out all week because she couldn't go with a button taped in to her tummy. Mrs. Leslie told me she had an AWESOME day at school today and that she was "talking" A LOT. She also said that Makily has learned to push herself back and forth from the table in her wheelchair. She was doing it today and giggling like crazy!

Mic-Key Button Hell Part 8,356

We just replaced Makily's mic-key button a week ago Friday.

Remember the one we had to pay $91 out of pocket for?

Well last night Allen was getting ready to put Makily to bed and out pops the Mic-Key button....balloon deflated and all.

I check the balloon and would you believe that there was a pin sized hole in it and the water was shooting straight out the side.

If I didn't live this, I swear I wouldn't believe it myself.

I storm around the house screaming things like

"Where the &*@@ is the KY jelly?"

"WHY THE ****** DOES THIS ALWAYS HAPPEN"?

"I CAN'T FIND ANY SYRINGES, I CAN NEVER FIND ANYTHING!"

"I HATE EVERYTHING!"

"WHY DOES MAKILY HAVE TO GO THROUGH THIS ALL THE FREAKING TIME?"
(there were many expletives used but I chose to with hold them here:-)

Allen just sat holding gauze on Doodles tummy while I ranted and raved while searching for all the stuff I needed to put back in the faulty button.

So it was NOT easy like the last time. She screamed like a maniac (probably because I had just finished storming around the house while ranting and raving) What a great mom I am. Once it was in Allen held Makily while I went into our bedroom and BAWLED while saying "my poor baby" and "WHY" over and over again. Then it struck me that I sounded a lot like Nancy Kerrigan and decided to get it together.

pathetic.

I wipe my face and go into Makily's room where Allen is feverishly trying to get Spongebob on for Doodles. He gets it going, I pick her up and rock her....she sees SpongeBob and calms down. Allen gets the tape so we can tape the thing in. He puts the first piece of tape on, he didn't do it the way I thought it should be done so I scream at him. He screams back and now we are having an all out war of words. Me telling him he's stupid and him telling me.....well he was telling me how very nice I am and that he would like me to take a nice trip (read between the lines :-)

Then Makily starts crying....again which makes me feel like total a*s crack so then I am telling her that no one is mad and that everyone is happy and we are both sorry and we will shut up. She calmed down and then I just held her in a heap and bawled my head off while saying "mommy's okay, mommy's okay" over and over.

really pathetic.

So then of course Allen and I both apologize to each other. We both know we are just taking it all out on each other. You desperately want someone to blast in moments like these and unfortunately we end up blasting each other at times.

A few minutes later we are talking about the button and about how it's freaking regularly $240+ and that we got lucky last time that they only charged us $91. Then I thought about how CRAPPY it is that they charge all that money for a piece of plastic with a balloon on the end.

What kind of person wants to make money off of someone who needs a FEEDING TUBE TO SURVIVE!?!?!?

I said "Ya know Allen I wish I had a huge closet full of mic-key buttons so we didn't have to worry about this ever again"!

Then the reality of how pathetic that sounds hit me.

When did my life become so jacked up that I find myself fantasizing about closets full of feeding tubes?

At what point did that become normal to me?

My reality REALLY sucks at times.

Then Allen and I discussed alternative brands of buttons. Cost is not the issue as they all cost basically the same. The BARD button does not have a balloon but has more of a "mushroom" on the end. They tried to switch Makily to a BARD when she was little and I still have visions of a 300+ lb GROWN MAN standing over Makily trying desperately to jam that thing in. I had to stop him because I thought he would going to break her in half. The "mushroom" does not collapse on this thing. So to get it in they use something called an obturator.

Here is a picture of one:


Makes ya just feel all warm and fuzzy inside doesn't it?!

They insert the obturator into the "feeding port" of the button which then stretches out the mushroom as thin as possible, then the whole thing is jammed into the stoma.

Sounds like a ton of fun eh?

This is a picture of a BARD BUTTON with various accessories. The button is on the left side of the picture. It's the thing with yellow tip sticking out of it. That is the "handle" of the obturator. As you can see it's already inserted into the feeding port ready to be JAMMED into an unsuspecting G tube kid. It is then stretched the length of the obturator (like a sling shot?). I don't know if I am explaining it well or not.



I can only imagine how painful it must be to have this done and Makily would not get any sedation to have this placed. When the guy tried to put this button in her in the past he did use a small amount of lidocaine jelly but I don't think it did much to help with the pain.

If it were to begin leaking (and we all know Makily is a leaky kid) I could not change it myself. If it was accidentally pulled out I could not place it back in either. They say these buttons almost never get pulled out but Makily is always the kid that does what NO OTHER child does. We are TWO HOURS away from a Children's Hospital that would be able to put it back in. Due to the way it's placed, the use of the obturator and the force involved in pushing it in they do not teach or allow parents to put them in.

Makily's stoma closes fast.

I don't like NOT having the option of being able to just put the thing back in. Granted we could throw a foley cath in the stoma but I can just imagine us being back and forth to Orlando over this button.

So honestly I am not sure what to do. Allen is really against the bard and I have always been too. My biggest concern is really in the way it is placed....it looks so barbaric and painful. On the other hand if it never came out or leaked or popped that would sure be nice.

Once again, here we are at the cross roads of two choice.....both of which SUCK.

On a brighter note I called Kimberly Clark today. They are the manufacturer's of the Mic-Key button. I was very monotone when I spoke with the lady. I explained what was going on and that the button before this only lasted for five weeks but that I had not called on that one because I know their "rule of thumb" is if it has been in for four weeks or more they will not call it "defective" or replace it.

She asked me a couple of questions. Then asked what Makily's diagnosis was. I told her and of course she had never heard of it so she asked me to explain it. I did. Then she asked if I had any other children. I told her no and that I was a carrier for her condition and that we are fostering to HOPEFULLY adopt Little J. She went on and on about how great that was. She was really being nice but honestly I just wanted to cry. ANYWAY she said that she would send me TWO replacements and I said "OMG SERIOUSLY"? like I had won the freaking lotto. She said yes that the "five week button" was "borderline" but she was going to send me a replacement for that. She said she could hear the frustration in my voice. I thanked her a million times and was about to cry. It was AWESOME to speak to someone who was understanding and kind today I REALLY needed that. I get so many people that work in the medical field that don't really give a damn. This lady cared.

Her name was Mary.

Thank you Mary.

For now Makily's button is taped into her tummy.

Mary is overnighting the two replacements.

You know it's a bad day when a twist tie totally kicks your butt.

In celebration of our anniversary we took the kids and went down to Orlando for the weekend.

We went to a crappy outlet mall. Stopped for lunch in their pseudo food court. I ordered a turkey sandwich on rye. The lady gets out the bread and Allen notices it's moldy. She goes to rip off the moldy piece....looks up....sees that Allen has noticed it and throws it away. She gets a new bag bread and starts to untwist the twist tie. She twists for what seems like an hour. After another 20 minutes of twisting the blasted twist tie she pulls out a butcher knife and cuts off the entire end of the bag.

I am not kidding.

She makes the sandwich and when she gets to the lettuce she just keeps piling it on, it looked like a whole head of lettuce. I finally said "uhm, can you take some of that lettuce off". She obliged.

Allen ordered lasagna that tasted much like a scratch n sniff sticker that I had in kindergarten. If you have ever had those Chef Boy Ardee make at home pizza kit, that is what the sauce was.

ewwww.

We stayed at Mike Ditka's Runaway Beach Club Resort.

It looked fancy schmancy and it was totally cheap since it's "off season" here.

Our first night there I asked for a crib for the room. The "book" in the room said it was $7/night for a crib (this was on TOP of the $10 a night "resort fee" that was NOT specified on expedia although they swear it is). I was perturbed because I think it's ridiculous to charge for a crib. Our reservations said we had a baby less than a year old so obviously where the heck was he going to sleep?

But I digress.

I had to call twice before they brought the crib and they tried to up the charge to $10/night when I QUICKLY said "uhm, your book says $7". The lady was like "it's supposed to be $10 but I will do it for $7".

Gee thanks.

We went to the pool area which was a mile from the room. Okay not that far but far enough. There are TWO pools in the same area. One is only 3 feet deep and has all the kiddie features, the other is an 8 footer with fountains. We of course opt for the kid pool and start playing with the babies. There is a group of say 8-10 adults drinking and yelling in one corner. Why oh why are they at the kiddie pool I wonder.

Oh joy.

We ignore them while they scream and yell "Marco Polo". One of the ran over to where Makily and I were sitting by the "umbrella fountain". He yelled "Don't mind me boys" to his friends while rubbing his chest (trying to be sexy mind you) under the fountain.

ewwwww again.

A few minutes later we were sitting on the edge of the pool when Allen tells me to check J's swim diaper. I check and diarrhea particles come floating out. I could see them in the water.

EWWWWWWWWWWWWWWWWW

We quickly get out of the water chuckling that the drunken adult fools in the kiddie pool were now swimming in little J Diarrhea!

Sunday morning we got up went to Typhoon Lagoon. Allen and I had an awful fight about staking claim on our spot (for those that don't know when you get to a water park marking your seat by throwing your things on chairs is very important to do early or you end up sitting out in the blazing sun next to a drain). I won't go into the details about the fight because it makes Allen look really stupid and me look like a royal itch with a B.

What can I say I was PMS'ing?

ANYHOO!

We took the kids over to the kiddie area. I took J over to a squirty fountain and Allen was taking Makily to another area. After a while I got lonely and went to look for Allen and Doodles.

Well I come around a corner to see Allen laying my baby in a tube AND LETTING HER GO DOWN THIS FLUME SLIDE THING BY HERSELF.

I swear I almost swallowed my tongue I freaked.

I was like "WHAT ARE YOU DOING"?

Well it was a TINY little slide and Allen had told the lifeguard manning it that Makily was disabled. She guided Makily over the rough spot and then Doodles went down the rest of the way......just like all the other kids.

I bawled.

Originally the lifeguard told Allen she could only let Makily go down once but after she saw how happy Doodles was she told us to let her go again and she went down it again....

......just like all the other kids. :-)

We floated on the "lazy river" several times. Makily loved it and so did little J. He is a maniac in the water though and wants to just jump in.

We slathered the kids in sunscreen about 100 times but they still got a little pink on their shoulders. Allen and I are FRIED. As we were leaving the park I was trying to express how burnt my shins were. For some reason "shin" would not come to mind so I kept saying "the front of my calves" and then changed it to my "leg bottoms". Trishtwo looked at me and said "Uhm do you mean shins"?

I am going to continue using "leg bottoms" from now on. I like it.

Allen and I rubbed each other down with Solarcaine and that blue aloe gel while standing under the ceiling fan last night.

We came home early this morning. Allen's buddy Steve totally did a "make-over" on our yard while we were away. It's needed professional work for a while but we have just not made it a priority. It looks awesome and I am glad the huge part is done. I am almost too ashamed to admit that we still had some limbs in the back yard from all the Hurricanes in 2004!

I was awful and took ZERO pictures. I brought the camera but spent so much time in the water that I didn't take any.

I'm Crabby.

I now realize why there are not many "GOOD" FOSTER HOMES.

YOU GET TREATED LIKE DOG POOP.

Yes that is why.

I didn't come into fostering blindly. I mean I knew fostering to adopt would surely bring some ups and downs. I could handle it if I didn't get treated like total CRAP all the time.

Today I had someone talk to me like I was a dog. This is nothing new though. You would think I would have gotten used to it by now?

This person actually works around foster children.

SCARY!

If I didn't love little J with all my heart and DESPERATELY want to adopt him, I would have told her where to go and how to get there. What's worse is that the reason she was talking to me the way she was is because NO ONE INFORMED ME OF certain policies.

HOW AM I SUPPOSED TO KNOW THESE THINGS IF NO ONE EVER TELLS ME?

ON TOP OF ALL THE OTHER THINGS I AM EXPECTED TO DO AS A FOSTER MOM I GUESS I AM NOW SUPPOSED TO BE PSYCHIC AND READ EVERYONE'S MIND.

This is the SECOND encounter I have had with this person....the first was almost as bad.

I will be avoiding said person at all costs from here on out.

Then I was "scolded" in the car line when I was picking Makily up. Let's all face it, CAR LINE SUCKS and it's always a HUGE menagerie. Basically I was yelled at because someone else IN FRONT OF ME didn't move all the way up.

HOW THE HECK IS THAT MY FAULT!?


I snapped back at the guy and then he said something TOTALLY un-politically correct. I just gave a dirty look and got back in the van.

What else has me in such a mood?

POOP.

I am up to my eyeballs in POOP.

Makily and Little J both caught this weird virus. Diarrhea, fever, runny nose. The diarrhea is like nothing I have ever seen. They are like two little poop factories. I would be friggin RICH if I could sell the stuff.

Luckily Makily handled the virus well. She scared the bejesus out of us on Sunday. The diarrhea started and she wasn't acting like herself. I laid on the couch napping with her for an hour and then she started "tremoring" all over out of no where.

I thought I was going crazy until I asked Allen if he saw it to and then I saw the panic in his eyes. She didn't feel warm but I checked her anyway and she was 102.1. We gave her Tylenol and a fluid bolus (which she retched on) and she was fine within about 45 minutes. Still scared me to death though.

J developed some extra complications from this "bug" and so he is on antibiotics. That should do wonders for the diarrhea right?

I have said it once and I will say it again.

I SOOOO feel for our garbage man.



We have to be the stinkiest house on the block. I imagine the garbage man approaching our trash with a look of fear and disgust...and wearing one of those bio-hazard suits. Our neighbor directly across the street literally puts out the TINIEST bag of trash every Tues/Fri. SERIOUSLY it's like a plastic walmart bag. I kid you not. It's embarrassing when I am dragging THREE big cans of baby turds down my driveway then I look across the street and see walmart bag man's trash.

I will have to get a picture of that.....

Please pray for less turds in our house.

Eight Years.

September 10, 2000 I married my best friend.

I had no idea that either of us would be who we are today.

I knew Allen was a wonderful man when I married him. I had no clue how wonderful he really was though.

I had no idea that our lives would be filled with such joy and sadness.

Most of all I never would have thought that my Allen would have so lovingly and willingly learned to work a feeding pump, change g tube gauze, give medications through a tube or learn to operate various machines that help to keep his daughter alive. I never would have thought that a man with ZERO medical experience would jump in head first, all for the love of his daughter.

Allen is a man who has never looked back. He has loved Makily from the moment she came into this world. He has never blamed me for her problems although in our situation I know many men would. He carried me through that first year of her life. A year when I wanted to bail out of life all together. When I felt like the only way to ever see a light again was to run away from our problems. I was so ready to throw in the towel but Allen would NOT give up on Makily....and he did not give up on me either.

I am so blessed.

I get great joy out of seeing him give Makily her meds, singing her his silly songs and telling her how wonderful and perfect she is. When I look at Makily I see Allen and that makes me proud.

He has continued to amaze me since J came into our lives. I remember being worried as he was very apprehensive that first month. Then I saw him soften and I knew he loved this child that was not of his own blood just as much as he loved Makily.

This made me love him more.

Allen takes care of me and our babies. He works so damn hard to make sure we have a decent life. His focus and priority are the children and I.

What more could I ever want out of a husband?

Allen, I love you more today than I did eight years ago. Thank you for being my husband and best friend.

Love you always and forever.





This one cracks me UP!
I had no tissue and my nose kept running. I had to wipe it (discreetly) WITH MY HAND and then I would go back to holding Allen's hand. As you can tell from the picture I am trying to suck up the snot.
Allen looks MORTIFIED that he is holding my booger hand!






I have a way better copy of this piece somewhere on my computer, just having trouble finding it.





By the way had Jenny Craig weigh in today....LOST 3.5 LBS THIS WEEK!

FOR A TOTAL OF

13 LBS IN 7 WEEKS!

WOOOO HOOOO!

Mic-Key Button Hell!

**Please see bottom of this post for urgent update on Reese Kostjuk**


So Friday morning when I walked in the door from dropping Makily off at school the phone was ringing.

Her button had come out.......balloon deflated and when they checked it, there was a hole in the balloon.

I've been here before...sigh.

I go through my used but saved buttons because of course her new "spare" was in her tummy. If you recall our insurance will only pay for a button every three months.

I found a good used button checked the balloon, sterilized it, checked the balloon again and it was fine.

I rush to the school, the NURSE also checks the balloon to make sure it has no leaks and I put the button in. Makily didn't cry at all. She was such a good girl.

I called Apria and started the process of getting a button overnighted to me. Since we had just gotten one a month ago insurance was NOT going to pay for it...we would have to pay out of pocket. There was confusion on how much the button would cost $33 vs. $240....no I'm not kidding. So I was told they would call me back with a price.

So at 2:04 I am sitting in the blasted car line to pick Makily up from school (I HATE the car line by the way but who doesn't?). My cell rings it's the nurse THE DAMN BUTTON IS OUT AGAIN!!! She said she checked the balloon and there is NOW A HOLE IN IT!!!!

She taped the button in and I picked Makily up from school.

I call Apria again and after arguing over the price, sitting on hold for what felt like an hour they tell me they will GIVE it to me for $91 with no charge for overnighting it. I said "well I have no choice, here's my credit card number".

We got the button yesterday and I put it in. Makily had done so well on Friday with the changes I finally got up the courage to do a video about the button and changing it. Andrea had done one and I really thought it was a cool idea. I know there is a lot of anxiety as a NEW g tube parent when you have to put a button in the first few times. I hope watching this video will help another family feel more comfortable about doing it themselves.

Make video montages at www.OneTrueMedia.com

**URGENT: PLEASE VISIT REESIE KOSTJUK'S SITE**

Reese is NOT doing well, is back in the hospital and they are not sure if she will pull through this time. Please visit her site and offer words of comfort, peace and encouragement for her family during this HORRIBLY trying and difficult time.

We love you and are praying FERVENTLY Ashley and Todd.

VISIT REESE CLICK HERE

Another Awkward Moment of The Day.

So today I went to Jenny Craig.

After my weigh in (more on that later) I am waiting at the desk for my food. Of course just like every week all the ladies that work there are "ooooooo'ing and ahhhhhhhing" at the kids.

Here is how the awkward conversation went.

JC Lady: Wow, you have REALLY strong genes.

ME: I do?
(I was confused thinking how does this lady know I have jacked up genes?)

JC Lady: Oh yes BOTH of your kids look exactly like you.....they really do.

ME: Oh Thanks! If you saw their father though you would probably change your mind and say they look just like him, I usually get that! :-)

I didnt lie either.

J does resemble his bio Dad at times and Makily looks just like Allen so I was honest at least!

****************************************

The agency called me again today. It was for a three year old boy. I immediately said no and wouldnt even let her tell me anything about the child. We can't take a child over two because I just don't trust that Makily would be safe as she can't defend herself. I was a little sad saying no but I know what my limits are.

****************************************************

I have lost 9.5 lbs in six weeks on JC. I am a little annoyed that it's not more but it's partially my fault. This week I lost NOTHING. I was ticked too because I actually worked out MORE than usual this week. When we went over what I had eaten it came up that I had skipped several meals mostly breakfasts. I really know better than to do that but I am stubborn. You think I would have learned by now. Kathy (the counselor) said my body was holding on to everything it had because I was starving it by not eating a breakfast here...or a lunch there. I still have a hard time grasping that I HAVE TO EAT to loose weight but I KNOW in my rational mind it's true so I am sticking to this. I am going to start writing down what I am eating every day so she and I can go over it next week.

*************************************************

It's a new day.

I just got a call from Snuggles new foster mom.

SHE IS GREAT.

I am so PLEASED that he went to her family. She was told he likely will only be with her for two or three weeks. They told me he was going to be "long term" so WHO KNOWS really what the truth is.

She thanked me over and over for sending the information I knew along with him in his folder. She said that she had never had anyone else do that and it was a huge help. She said Snuggles is doing really well but that he says "Mamma" often at her house too.

I found a hat that I forgot to pack for him last night and it made me so sad. I am so grateful that I was able to speak with the family that will be taking care of him.

I feel a lot better about it.

*****************************************************************

Little J is a spitfire lately! I love it. He is ALL OVER the place, follows me everywhere. He LOVE LOVE LOVES the water. Goes crazy during his bath each night. He really cracks me up.

BATHTIME!


He went to sleep really easily tonight so I am hoping that continues. It's been a battle since he is teething but I am hoping we are through that rough spot.

He is an eating machine lately too. He wants EVERYONE'S food. His, yours and the stranger at the table next to him too. I can't eat ANYTHING without him crying for some of what I have. He ate TWO jars of baby food tonight, some arrow root cookies and STILL harassed me for some of my Jenny Craig. I am thinking growth spurt.

His developmental eval went AWESOME and he is AHEAD in everything except for speech and he is "normal" for that. He will have another eval in a few months just to be on the safe side though.

**************************************************************

Makily is doing well. She LOVES school! Every morning she is all smiles and giggles in the car on the way. She is the only student in her class the last half of the day so I think they are wearing her out, she is usually very tired when she gets home!

Here she is the morning on the way to school.

Wonder what we'll do today!


HAPPY GIRL!



She should FINALLY be getting casted for new AFO's on the 12th. I have had a hard time getting that set up but I think it's straightened out now.

I have not heard from Kidcare yet. No denial but no acceptance letter either.

Nothing new on J's case right now. Things have been quiet since Thursday and I honestly don't know if I really want to know if anything else is going on. The "family member" that was supposed to have been disqualified has still NOT been at this point. The information that will count her out has not been documented yet but I am told it will be and very soon.

We continue to just wait and see.

Snuggles is gone......

.......and I am sad.

It's 12:41pm and they just pulled away with him.

It's raining here, literally.

Instead of just handing him over, I carried him to the car, Allen kissed him and said goodbye before I walked out. Snuggles didn't seem to know anything was happening. I buckled him into the seat. Then I covered him up with the blanket I have been rocking him to sleep with every night. He smiled at me. I wanted to cry but instead I just tucked his sippy under his arm like he likes, kissed him on the cheek and said goodbye.

Then I walked in the house, cried and then decided to blog.

Please pray for little Snuggles, my heart goes out to him and I am sad I could not have helped him more. I know that he needs more than we are able to give him right now and so I know we did the right thing. That doesn't make me feel any less guilty about letting him go though.

I am glad we did it. I wouldn't take it back. When I start to ask myself "Why the hell are we doing this?" I think of Snuggle's HUGE toothy grin and it makes it all okay. To know that we helped a child that was in a very scary situation and needed to be comforted is one of the most rewarding things I have ever done.

What scares me the most is that if it is this hard to let Snuggles go after less than five days, I do not know what I am going to do if I am forced to let little J go.....ever.

God Help Me.

So this is going to probably hurt.

Snuggles has attached to me.

I feel great about it and GUILTY at the same time.

Yesterday we went swimming at Granny's. Snuggles LOVED it but would not let ANYONE else hold him or push him in his boat but me. He would cry when they tried and then yell "Mama" while reaching for me. He was very friendly and would smile and laugh at everyone else but would only let me hold him.

I don't know why but I am shocked how quickly he attached to one person.

Last night I laid on the couch with him wrapped in a blanket and that's how he fell asleep. He didn't fight that at all. He didn't even stir when Allen picked him up and carried him to the crib.


J LOVES HIM.

They play together and every time Snuggles does ANYTHING J laughs hysterically.

Last night while we were giving him a bath, he was so happy and having so much fun.

I just started to cry.

I feel so bad for him.

I feel bad that we agreed to take him short term.

I feel like had I said no they possibly would have found a place he could have stayed long term.

Allen says "how do you know they wouldn't have had to put him in a group home (which I know they have done with babies younger than him) or a 24 hour day care the whole weekend"?

I don't know.

I do know that this child was taken out of his home, put in mine and is now being moved again.

Of course I have analyzed every part of the situation as far as keeping him long term is concerned and it's just too much. If Allen was home every day it would be doable. With it being only me four days a week, Makily having school every day, therapy twice a week, a billion appts for her, social workers, GAL's, court dates and all for J.....it's too hard.

I also am being realistic and I know that keeping Snuggles long term means throwing my heart out in the street AGAIN and praying it does not get smashed. I have a constant sense of dread when it comes to J's case and so adding ANOTHER case that is likely going to be LONG and drawn out is not something I can even imagine doing right now.

I also know that with another one in the house it will be INCREDIBLY hard to give them all the attention they NEED and deserve. Maybe if it was a year or so from now. J and Snuggles are only 10 months apart. I am sad for him and I will miss him though. Today he has had a few moments where I KNOW he is missing his mommy. He woke up from his nap and would not leave my lap for almost an hour. He got up and started crying, then ran back to me.

Allen is not leaving until Wednesday this week. The hurricane has backed everything up. He will take Makily to school. I plan on taking Snuggles for his "72 hour appt". They are supposed to have a physical within 72 hours of coming into care but since this was a weekend and then the holiday it has not been done.

I will be calling the agency in the morning to find out how they want to do this.

Please pray that Snuggles will transition well. Pray that my notes will help the next family that gets him. Pray that he is placed in a home that will love and take care of him like he deserves.