Judah day 2

Well where do I start? Lets start at 4 am because I forget the stuff before then. Judah still was not peeing so they had to cath him. They tried and tried same size as before and everything but couldn't get it. So they stopped. Then they came back. They gave him happy juice and when I woke up they were getting some urine and I ask about him and they said he's fine just playing with his wristband. Then we both went back to sleep. I woke again and ask them not to do vitals because he had a rough night and was asleep and I didn't want him to wake up. They were so nice and agreed. 

I went down and got coffee and breakfast and waited for him to wake up. He didnt wake until around 10:30. I ordered him breakfast and noticed he peed through everything. So no morning cath!! Yay!! He ate all his food and was in a very pleasant mood but a bit sleepy. 

Next nutrition came in for a consult. We tied for a long time. During that time the nurse tracked down a honeybear cup and brought it to him. He tried to fool us into thinking he was drinking but then started to drink for real. He had one of those full of water and then full of chocolate milk. He liked their chocolate milk.  I couldn't believe how different a kid he was, happy, calm, drinking, smiling, laughing. A far cry from the boy I took to them. Nutrition recommended feeding by mouth and supplementing liquids by tube at night. 

We ate lunch and he drank more. Then he peed again and this time peed through again and all over the floor. Just an FYI we figured out that pull-ups can hold up to 377 mls of water but no more. Also huggies diapers can hold 350mls with room to spare :) lol 

Paul and AJ came by and we had a good visit. The doctor came a few minutes before Paul got there. I was glad Paul was there to listen and remember since I was running on about 2 hrs sleep. Interrupted sleep too. So a few things...

At 4 am I remember them saying the previous dr wanted a consult with endo for growth hormone. I was half awake and didnt feel like explaining myself so my answer to them was no. Just plain old no.  I talked to Misha's endo about Judah and we decided that was not the best thing for him. This doctor brought it up and I told him no and our reasons. He completely agreed.  

Next he talked about getting Judah back to baseline. He was no longer engaging in life, playing, smiling, responding to commands or his name. He came up with some ways we could do that. He also agrees the less medical right now the better. He thinks that Judah being so full of poop may be causing him to not pee as well. He also said that having this issue for all his life has probably stretched his ureatures (sp sorry) making them larger which we knew he had mega urerters so that made sense. The doctors plan is to insert a few tubes certain places one being an ng tube and then cleaning him out completely and started new. Once cleaned out he will then flood him wi fluids and see if and how often he pees. 

Doctor says we are there at least until Tuesday and for me and Paul not to be around for the inserting of the tubes. He said he doesn't even hang around for that because he wants a good relationship with his patients. 

He said he also is done looking at his bladder and getting caths. Yay! Too invasive and really messing Judah up. So he told me to go home and rest at night and visit during the day. The next few days would be nothing but explosions cleaning Judah out. Sounds fun. Also Judah is anemic so he started him on iron. Forgot to put that in there.

I have never left any of my kids at the hospital before so this is new and scary for me. 

Please pray for Judah. He seems to be in good spirits and getting better. It's nice to see him smile and look at me in the eye again but hard because its an institutional setting that makes him so happy and comfortable. 

They will be doing the tube tonight so please pray he does ok with that.

Be blessed 

Judah's first hospital stay

Oh that dreaded day is upon us. It started out like any other day. We had a nutrition appointment. I had Misha and Judah with me and thought I would be home in an hour. What we thought we were admitted for was an ng tube to help with nutrition and upon arrival things got worse and we are now much more concerned that he has had no urine output. They did a scanned and he had  585mls of urine in his bladder!!! Then they cathed him and took out 306mls. Then repeated it later (at 4am) and he had 382ml cathed him and were unsuccessful in getting out any urine at all. Called the dr gave him happy juice to sedate him redid cath. By this time I had fallen asleep for 20 mins and missed what they got out. So our little overnight to place an ng tube seems it is turning into a long stay here. Especially since its a holiday weekend and no one works until Tuesday :( I facetimed the kids but haven't seen then since I left yesterday morning. Pray for my amazing husband to give him strength to do this alone for awhile. If he stays past Monday I will have to do something I have never done with my kids before. I will have to leave the hospital without him and go home to take care of the others. Pray for us. Pray for the doctors to have knowledge to get to the bottom of this. Pray we get the scans we need done and the doctors listen to me. Thank you.

Be blessed

http://youtu.be/7wgAPqgYQ8Y

Selfish

I had a revaluation today in the bathroom of the hospital. I'm selfish. I had just been called an angel by a nurse and my stomach turned. "I'm not an angel", I wanted to scream. I'm horrible. I'm selfish. 

You know its like this: when you ask a friend, "hey can I help you? Is there anything you need? I can come clean your house." They say that would be great. So I go over to their house to clean it and then I complain it is messy. 

That's what I feel like I did to God. I said,"choose me, send me, use me. I can do it. I would love to help. Can I help with that?" Then when He says yes, I complain about it. It's hard. It's messy. It's long hours. It's different than I thought it would be. Messier. Maybe I even feel slighted or that God isn't as grateful as I thought He would be for my sacrifice that I ask for. 

Selfish.

I think somewhere along the lines I forgot that I ask for God to break my heart for what breaks His. I forgot that I ask for Him to send me. I forgot that I prayed where You go I will go. Where You stay I will stay. Who you love  i will love. I had a choice. This life wasn't thrust upon me. I chose it. I ask for it. I'm not an angel or a saint. I'm a person in love with her Savior willing to do what He asks. Then complain about it. Yuck! How selfish. Even self righteous. 

Jesus went to the cross and suffered immeasurably and He didn't complain. Aren't we suppose to be more like Him? Isn't that the point? 

What I need is to be more grateful and less begrudging. This is a hard life but my God will supply all my needs. He gave me the equipment to do the task. It is up to me to use it. 

So instead of complaining though this thing called life, I will try to be more grateful. I ask to be chosen and was chosen. Sure, I didn't realize all I was asking for,but obviously God saw something in me to make Him know I could do this. For that I am grateful. 

I'm in the potter hands. Instead of fighting to get away I should mold to His ways. I'm in the refiner's fire and instead of complaining about the smell of smoke I should praise Him for not let me burn to ash. His ways are not my ways.....they are way better. 

Be blessed

Another day another diagnosis

Monday while I was running an errand and the endo doctor herself called. She is an amazing doctor. I was not expecting a call from her and thought it was just a follow up to see how Misha was doing. 

We found out Misha has a new diagnosis (DX). Diabetes insipidus or DI. This is not diabetes 1 or 2. It actually should not be called diabetes at all. DI  is a condition in which the kidneys are unable to conserve water. I knew he peed more than my other kids. About every 2 hours he pees through his diapers. They aren't cheap diapers and we went up a size to hold more. I had no idea there was an underlying issue. 

Thank God for good doctors. Our endo thought maybe he had it because of the MRI but she wasn't sure because he wasn't crying at night for water. But what I said about that was that he may have cried for water or a bottle at first but you don't get drinks in the middle of the night at the orphanage so he would have stopped crying. 

So back to the results from the bloodwork. It was confirmed beyond a doubt that Misha does have it. Some good news is that he has somehow managed to regulate his own body. We are never to force him to drink and never to deny him a drink. He started on a new med and had more bloodwork done. 

She doesn't understand how he has made it this long especially given the conditions at the orphanage. But I know how. God. God knew he was my son the day he was conceived. Even before that. He knew he needed to be the orphanage favorite in order to survive. Had he been treated like our other son then he would have died early on. 

Basically what has been happening is that he pees out every bit of water his body has. So he needs to be drinking way more in order not to bottom out. I have noticed a difference the last two days of him being on the meds. He is peeing a tiny bit less and also drinking a tiny bit less. We will wait to see if the meds are correct after the dr reads the bloodwork. 

I am so beyond grateful to have him in my life. 

Be blessed

5 years ago

Five years ago the world lost a great guy, but Heaven gained him. Things have been so crazy around here I passed the date without being aware of the significance. That doesn't mean it doesn't hurt anymore or that I forgot him. I remember him every time I look at my youngest daughter. I think of him hundreds of times a day. Sitting down, being still, remembering, it hurts. Hurts like the very first day after the accident. The deep pressure in my chest is the same. The foggy vision due to tears is the same. The hurt yeah it's the same five years later. 

I don't let myself remember the details to the accident. They are too horrific and I spent the last five years trying to forget. What I try to remember are the things I loved most about him. It's not hard to remember those things because everything that made me smile in him is in my daughter. God knew how much Paul and I would need her. Five years later I still thank God for bringing me my miracle baby. My saving grace. The reason why I am still hear as well as all of her brothers being here. 

I remember the first time we met. It was the day of his wedding. Well maybe we met before that but I remember that day. His beautiful bride. The love they shared. That was the first time I ever danced with my then boyfriend (now husband). It was magical. Us four were inseparable. I had my first beer at his house, lol. Shhhh.... I grew up with him and his wife. I mean not all my life but you know like I was kid before them and then grew up with them.  He was more than a best friend, no real way to describe our relationship. It wasn't sexual, wasn't dirty, it was love, like agape love. The way we were to love one another. 

He was best man at our wedding. He and his wife trashed or "decorated" or house on our wedding day. She was my maid of honor. We were all so young. He was there when we bought our first house. he was there to help us move in and there to help us fix it up when a ton of water fell from the ceiling next to his wife and I. They were godparents for our first child. Oh how he loved my oldest. I remember them being in the hospital the night she was born. The nurse told them visiting hours were over but he said he wasn't leaving he was the dad too. Haha! Then the night we came home from the hospital he and his wife stayed with us. He clogged up the toilet and we didn't have a plunger. So he and Paul went out to Walmart at midnight for one. They came home with belated valentines day gifts and got the bright idea we would celebrate days after each holiday because everything was cheaper. 

Life happened and we didn't get to spend every day together anymore. We grew up some more and circumstances kept us from seeing each other. When he had his accident I said I'm going to go to the hospital and tell him to be more careful (we thought he cut off a finger or something) and that we loved him and missed him so much. But before I could go the phone rang again. Now, now I have to wait until Heaven to see him again. Somedays like today I long for Heaven. 

I walk to the kitchen to get some coffee and I pass my daughter. She will be 5 soon. He would have loved her. She smiles up at me and my heart may burst. She would have loved him. 

Be grateful 

Dentist x7

Today 7 of our 8 had dental appointments today. Some people like to take one a week or two at a time but I really like one day just taking all of them. Then it is done for another six months. 

So we got there, just me plus 8 and took up almost the entire waiting room haha. It went very smoothly and very fast in my opinion. Got there at 10:15 for a 10:30 appointment and we were in the car pulling out of the parking lot at 12:35 :)

The girls did great. T had a crown put on after cleaning. She was in a bit of pain but it has subsided now. 

N did not want to do anything.

"Can you get up on the chair?"

NO!

"Can I take a picture of you teeth?" 

NO!

"Can you open wide?"

NO!

Lol. He was a hoot. And somehow his charms worked because he was given 2 cars toothbrushes! He has no cavities. Yay! 

M did great except was trying to get away with stuff while I wasn't looking. I kept a closer eye on him and he did great. No cavities. 

S was a dainty lil princess and did fantastic. She has no cavities but needs braces. They aren't in a big rush and either am I as she is only 6!!i can't believe they even do braces that little. Oh and she has her molars coming in and has I think 4 more loose teeth. 

A did great. Last time she would not let them do anything. This time she did it all. X-rays, cleaning, check up. All done. All good. No cavities. 

C did good too but she has a lot of cavities. Her plan includes several more visits and a 1600.00 out of pocket bill. Oy vay! 

This was Misha's first ever dentist appointment. He hated it! First, they started out asking me to change his birthday.

"Ma'am we will need you to change his birthday. You put he was 5 and a half years. "

No, that's right. (Smiling)

"But..5 and a half years?? Him?!" (Confused)

Yep he's tiny and has pan hypo pit. 

"Oh, ok."(still clearly confused)

They tried to do an X-ray but his mouth was too small and he gagged. They said when he is bigger they can.  Then they ask me to lay down in the chair and hold him. So I did. He was all happy til she looked in his mouth. He was like get the heck outta here lady! She then cleaned his teeth and he did well. The doctor looked and we have some major cavities and such. He needs to be at the hospital put to sleep and have the work done just like J. 

I was complimented by everyone on how well behaved the kids all are. There was a mom there who has 8 kids, one adopted. She only had 4 with her. 2 were older.  Then I had a mom tell me how impressed she was with how well they all played and took care of each other. This mom actually just started the adoption process for a child in foster care under 3. 

Then we got a God given blessing. When I went to pay they said we had a credit so the bill was much much less than I thought. Thank you Jesus!!

It was a GREAT day.

Be blessed

Movies

Since the boys have been home they have been to two special need viewings of movies. Turbo and Planes! They both have done very well. Misha seems to love the movies and shouts "Bravo!!" at the parts he likes the best. Judah still quietly but watches the entire movie. Yesterday he even ate some popcorn!

Studio Movie Grill has an awesome program for kids with special needs and their siblings. Tickets for the kids are free and only the parents pay. This is such a huge blessing. Our family of 10 goes to the movies for 12.00!!! Without this program we would not be able to go to the movies at all. 

It is such an amazing break for our family.  We get to go out and be a typical family for a morning. No one to look at us weird or point or call names. Sometimes we hear the beep of a feeding pump or the over zealous laughter of a child in the theater but it never bothers us. 

If you didn't know about this or haven't taken advantage of it I encourage you too. We also have such a wonderful time. Just go to their website and check out when and where the next movie will be. It's so much fin for all of us. 

Be blessed

One month home

One month home

Already? Somedays it seems as though they have always been mine and here at home. Other days it seems like just yesterday we were pulling into the road leading to the orphanage and seeing Misha and his baba in the middle of the road, waiting for mama. 

So what's been happening? 

Lots of changes. Lots of doctors, labs, specialists, hospital visits. Lots of firsts.  

Misha seems to have the attitude of, "I've waited my entire life for a mama and I'm loving this!" He is speaking so much. Both English and Bulgarian. He jabbers all the time and is always happy. We have him finally on the correct dose of hydrocortisone that is his life line since he has a hypo plastic pituitary gland. He is also on a different growth hormone as well. The doctors are not convinced that he was getting the growth hormone regularly or the right way. 

I have been ask what prognosis I feel Misha has. Will he ever be able to live on is own or age appropriate. I have to say since bringing him home and seeing all these milestones I am firmly believing he will be able to do things on his own and will catch up. That being said I am in no hurry because I love having a baby in the house. Haha. 

Judah has been through the ringer. His medical needs are far worse than we knew. He has some kind of bruising disorder that the do tors a currently trying to figure out. He bruises at any little thing. He fell and got a huge bump on his head and that resulted in 2 black eyes. His knees are bruised everything is. I rushed him to the ped and they rushed him to the ER. They thought it could be a type of cancer or worse. 

I also noticed that with each doctors visit and procedure Judah slips further and further away and into his own world. He has become almost catatonic. I went back to the ped to tell him what I thought and he agreed. He said no more medical for awhile.  He wanted to run blood tests and get him on an antidepressant and after that we were to cancel all appointments until the meds have been in him awhile. 

He is opening his mouth more when he eats. Otherwise clenches shut. And he is taking more unassisted steps. He's protesting about it of course but doing it none the less. 

So as a remind per to myself I will write about what they could do when we picked them up and now. 

Misha

One month ago

Had maybe one to two words

Quiet no babbling

Couldn't drink from a straw

No chewing

Held food in mouth all day

Ate very small amounts of food

Didn't eat anything other than baby food fed to him

Rocked any time he was put down

One month home

Eats crackers, bread, waffles and other things by mouth by himself

Very good apatite. 

Still no chewing

Doesn't hold food in mouth about 90% of time

Has 18 words and will say phrases

Doesn't rock.

Drinks from a straw

Talks all the to me

Dances

Loves life! Joy unspeakable! 

Judah

Didn't open mouth even for food.

Couldn't stand without holding on to something 

Couldn't walk unassisted

No drinking

Grinds teeth 

Eating only baby food stage 1

One month home

No more grinding teeth

Drinks from honeybear straw cup

Eats anything we eat only blended or chunky

Walks unassisted for several steps

Stands unassisted

Opens mouth for food and when ask (sometimes after awhile of asking)

Judah has a long way to go. We're hoping the medical break and the meds will help bring him back. He has filled out more as has Misha. 

Judah is 46lbs now and up from a size 3t to a size 5 :) (he was 42lbs one month ago)

Misha is gaining as well. He is up to 24lbs (was 22lbs) and still in a size 9-12 month clothes but the belly is bigger :) 

The kids adore them as do Paul and I.

Please continue to pray for our boys. Thank you.

Be blessed