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

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

I feel like a rung out washrag.

Friday I felt weird all day. Just out of sorts. Sleepy, groggy, nauseated etc.

I spent most of Friday night into early Saturday morning hugging the toilet.

Oh joy.

Since then I have felt so lethargic, walking across the house leaves me out of breath. ICK. I keep breaking out in sweats, if I didn't know better I would think I was going through menopause at 30.

Hoping tomorrow is a better day.

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Thursday J had visitation again. I sent a note with him. I really got a wild hair and sent four pictures of him. I had only intended on sending one but Allen and I couldnt choose which was the best. His bio sent back a very gracious reply. Truth be told I was excited to read it and then AFTER I read it I wished I hadn't.

*sigh*

I go from desperately wanting to loathe J's bio's to actually feeling sorry for them. Don't get me wrong, in my mind there is NO EXCUSE for what happened that put them in the position they are in. This is not their first "day at the rodeo" so to speak.


It is no one's fault but their own and they both should have known better.


On the other hand reading a letter saying things like "thank you so much for taking such good care of J, he is cleaner and happier since being moved to your home and we are so grateful" tends to make them more human and not just a "situation".

Does that make any sense?

I don't know it's just all very confusing and conflicting.

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Delaney is going in for a bone marrow biopsy on Tuesday. We are all on edge about that and I am sure no one wants it to be over with more than my sister and my brother in law. Please pray that the test results come back fine and that little Delaney does not need any further blood draws or needle pokes.

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I spoke with both the home health company and the insurance company about Makily's bed. They will NOT cover the sleep safe but they will cover a "fully electric home health bed". I looked up online this is the bed they approved.

Here it is:



When I saw it the first thing I said was "there is nothing on that bed to keep Makily in it!!" She said "oh well the rails would come with it and then directed me to the "safest" rails for Makily.
Here is a picture.

They picked those for Makily because they go the length of the bed, all the others are either half rails or less than that. These rails ARE NOT going to cut it and if they would have carefully read my letter they would have realized that. Makily will get wedged in between the bed and railing in NO TIME I can see it already. She is so wiggly at night I KNOW her tubes/wires/cords are going to get tangled and caught in that railing. For Heaven's sake she just fell out of the bed because SHE GOT WEDGED IN BETWEEN THE TODDLER RAIL AND MATTRESS AND BROKE THE TODDLER RAIL! Everytime she has been in the hospital in one of their beds I wake up to find her sideways in the bed with her arm/leg stuck between the bars/rails.

SO NOT SAFE!


Which is why we picked this bed.



See no rails, nothing for her cords and wires to get tangled into, no way for her to wedge herself in between anything.

At this point I have to write a letter of appeal and I will include pictures of Makily all tangled up in her wiring/tubing. Hopefully I will be able to catch her wedged in her bed....isn't that horrible that I hope to catch that? I should have taken a picture the last time but I was so mortified I didn't.

Right now she is sleeping in a toddler bed and I am sleeping in her big bed when Daddy is out of town for work. J sleeps in his room in his crib. We figured if Makily falls out of the toddler bed at least she is only falling a foot rather than falling from the height of a twin bed. She has already found ways to wiggle down past the rail on that and I went in last night finding her halfway in and halfway out of the bed...


...................................WHY DID NT I TAKE A PICTURE? ACK DANG IT!

All over the place.

If you recall I submitted all the paperwork OVER A MONTH ago (March 17th) for Makily to get a Sleep Safe Bed. I called Apria (the home health company) two weeks ago and spoke with a lady named...well we'll call her Nicky.

She says:

"Mrs. Caldwell I submitted that THE SAME day you sent it to us.....I LOVE a challenge, I am going to stay right on top of this, the insurance company won't even talk to us about this until it's been 30 days so I am putting it on my calendar to call them when 30 days is up"

Inside I laughed, I've heard that song and dance before but whatever.

So it's been over a month now, I call BCBS, of course they say they have no idea what the heck I am talking about. I call Nicky back at Apria and she says "Who did you talk to customer service"? I say "uhm, yeah who else would I talk to?" She replies with "I need to call this other dept, they will know about it". I ask her for that dept's number and she says she will call them for me THAT MOMENT.

FINE.

I don't hear back from her the rest of the day.

I call the next morning and she says they told her the same thing, they don't have it.

So I have waited A MONTH ON NOTHING!

To top that off, it will be at least another month for them to review it and of course deny us.


Nice huh?

I asked her if she spoke with anyone when she originally sent it and she said "I usually don't, typically I just fax it over to them".

God forbid she call and MAKE SURE they got the fax and that it was being taken care of.

She said she "re-sent it" and that if I would like she would "put it on her calendar" to check on it in two days.

I laughed at her and said:

"No offense but that's what you said to me the first time I called, you never checked on it and if it weren't for the fact THAT I CALLED, I would still be sitting here waiting and they STILL wouldn't have it, so thanks, but no thanks, I will continue to take care of it myself because that's the only way I know that it's going to get done".

I didn't even give her a chance to say anything back I just hung up.

I am so tired of having to go behind people to make sure things get done for Makily. It makes it very hard for me to be nice and pleasant.

On a good note the CEO of Sleep Safe Beds contacted me via email. His wife found my blog. He said that if we have problems getting coverage to call his office. They have someone there who specializes in working with the insurance companies and getting things paid for. I was really impressed that they contacted me. It was really cool!

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We are still waiting for a placement. I talked to the Director of our agency today. She is very, very nice and I thanked her for all of her help. Once her and the director of licensing found out about the struggles we had been having in getting our license, they took over and we were licensed within two weeks. We got the hard copy of our license in the mail yesterday. I am so framing it. She (the director) went into the placement office while we were on the phone to ensure they had our names and check to see if they had any babies. None for Marion County right now so we just are playing the waiting game. I sleep with the phone, waiting for the call. Allen and I are reallllllly excited.

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Delaney developed what my sister thought was the chicken pox (chickie pops as Delaney calls them) last night. We were actually happy because that would have explained the abnormal blood work. Her big brother Micah asked my sister if Delaney got "chickie pops" because she at too much chicken.


Too cute.

She took her in to Dr. Pierre today and, it's not chicken pox. We don't know what it is. For now we are calling it a "viral rash" but she is not showing any other symptoms of anything else. Since she has the rash Dr. Pierre is waiting to repeat the blood work until Tuesday now. Gotta love the waiting game.

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Makily has a finger infection. Every now and then the tips of her fingers will get red. I assume it's from always have them in her mouth. Typically it will go away within a day or so. Well this time her middle finger got really HOT and inflamed, the skin started peeling, then I noticed her ring finger was starting to blister. I took her in to see Dr. Pierre and it's infected. (I swear between Makily and her cousins we keep her in business huh?) We soaked her hand in Epsom salt water and she thought it was bath time. She "splishy splashed" her and me the entire time. It looks much better today and she is on antibiotics for it.

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Sorry for the lack of really new pictures. I still have not gotten another flash drive and my computer has almost zero memory left. I have gotten rid of everything I don't use and so I know it's the fact that I have a BAZILLION pictures on here. Hopefully I will have it taken care of by next week though!