What a few days it has been!

So, the weekend went by with a few hesitations it was good. Kenadie decided to show her ms d that she can show off still. Causing a good desat with her oxygen. Ms D told her lets act like a lady and keep those antics to herself. ;) lol. A few times gagging and one or two times trying to vomit but overall she has behaved. I am learning that when her tummy is starting to look like she's had a keg its time to cut off the food for a few hours and give those intestines a chance to do their job.. as lazy as they are at it though.
I called monday to talk to dr s in texas. I got our favorite nurse ms t. She is so sweet god bless her one day please! :) She listened and talked back but she loves ms k like her own grandbaby she said well we will just have to tell dr s what is going on with the love bug. I also told her how mean the resident was on the phone to us when she was having her enemsis issues. That it turned out to be an obstruction. Love it when the resident told me she could not poop if she had an obstruction. Ha she proved you wrong! Anyhow. She told me dr S would be calling me back in a day or two. Here i sit on Wednesday and we have not had a phone call. hmmph! We go back down south april 26 for kenadie's cardiac clearance for her gi study. So i know we will see him then. We are the only one who he lets just drop in clinic. :) Anytime we are in town he said YOU BETTER COME BY CLINIC SO I CAN LAY EYES ON HER DO YOU UNDERSTAND ME?! yes he was loud about it too! Unique guy. I just dont want to wait till then.
So today... one of kenadie's nurses who we liked site on sceen quit. No notice no nothing. Just called the agency and quit. I knew it was too good to be true to have a weekend nurse who we actually meshed with. She was so good with kenadie too. We were her first ambulatory case (mobile not bed bound). So needless to say I am irritated.
On a personal note. I got my class completed that I needed to complete. Finally. I handed in my papers and asked when my grade would be available. He said all you need to know is you passed! HECK FREAKING YA! Then he is the same professor that i have for college algebra. So he knows my situation and all that yummy stuff. I took one quiz today and got an 80% on that without cracking a book or stepping in his class. So yay me! Also if the stars line up.. I might get to have a night out with my husband alone. Our family friend sheshe is going to come watch k and her sisters for me. So we might go to a bnb. Not sure yet. We had one great experience at one in texas and would love to go back again. I just know we need 1 night together.. Have not done that in too long.

What a month this has been!

So far the month of march has been hospital month for us. Kenadie was admitted to the hospital on March 6. She had gotten a stomach bug, when we took her to the er her numbers were crazy and the liver decided to throw a tantrum. So we stayed got fluids. On the 7th I proceeded to get sick in her room. Vomitted my little self up. Thank god for a script left from my hysterectomy to get me through the vomitting. The nurse was so sweet that night. He helped me alot. Ms sheshe (a close family friend) came up and saved my day too. She let me vomit and die in misery! lol. K did well but she would not tolerate her feeds for a few days. We lost many iv's and had many blood draws. The count came to about 21. She got discharged on friday afternoon about 6pm and we went home visited some family and went to bed. Saturday morning she woke up. Pale and tummy looked rather big. I knew that things weren't going to go well. We still went on with our day. Then at 7pm my husband calls me to say that she is vomitting. Crap! So I come home tell nurse C that to watch her if she vomits again we will go back. She vomitted again so we went back. They said she is not going anywhere. This time we had a full obstruction in her jajunem (sp?). So we weren't going anywhere fast. They called dallas to see what our gi wanted to do. Since ours was not on service it was a tossup of who would take care of us. Dr S wanted her down there but i have a feeling that Dr Salesman made his pitch so we could stay. We had to wait it out. It was not fun at all for kenadie. She loves to eat! So if you had something you had to leave her room. Dont even bring a drink in. It was not fair to her. We got moved to a big room and enjoyed our little "home". Well as much as you can. You learn to do what you have to do to make the best of it.

We made some special friends up on the ward. She has a rare child also. His name is Rich. Please keep him in your prayers that God will heal him or not let his intestines bleed for a very long time! He goes through quite a bit of blood! So donate people please! :) When you make a connection in the hospital you almost feel normal. Like your child is fine. They know the challenges that you face.

There was another situation that was brought up to me while in the hospital. My family member not dealing with kenadie's issues. Please know I wont do just peaches and cream news. I can't. I dont get it that way. It hurts that some can't accept her for what is going on. I may be wording it wrong as accepting but I know that they dont like to acknowledge what is going on. I have to face the music 24/7/365. Deal with the naysayers coughs her old pediatrician.. WHERE IS SHE NOW!!!!!!!! Sorry had to get that out. Then my 3yro alexus does not want to be at my house at all. She says its not my house she thinks granddads is her house. Its where she feel stability at. Genesis likes to be with us but come night time she doesn't. She wants to sleep somewhere else where she feels like wont change. Where are they when all of this is going on? OR just ask.. how are you guys doing?! Personally i thought family banded together when the rough times start going. Am i wrong for thinking that?!

On a personal note I passed 2/3 classes and completeing the other one this weekend. I am now in clinical labs, doing a&p, and college algebra. Most of my professors are very understanding and have taken a personal interest in kenadie. I just pray I can do this and I dont get taken off the right track!

Trying to go back to blogging again!

I am going back to blogging again. I decided to change my url back to the same. I am not going to let some drama sway me from MY journal of how I feel. It is MY blog. My time to vent my feelers. Please know when i type. I am not thinking of who might get offended or what not. I am typing my feelings. I am going to try and keep some names anonymous due to some family possibly reading it. But other than that. My mother can attest I am a straightshooter and if I dont like something I will make it be known. My blog is going to talk about my children (living and my angels), marriage after having a special needs child, life, death, family issues, anger, and medical stuff with my daughther. Please know i have a sailor mouth. Far from clean. lol. But I am working on getting it better.

Now if you have any questions please email me at hancock _ alisha @ hotmail . com (without the spaces).

A good vent! (an interesting event lead to this vent..cps was a while ago though)

Hello all. I was going to come on here and rant and vent. But I am not sure where it would have gotten me. I have let my anger get the best of me. When i found out that cps was called on my house. I got livid and could on see fire. Like how and why could someone do such a thing to me. I love my children and try to give them the best. I took my anger out on some people that maybe I should not have and took any comment they made whether it was towards me or not offensive just so i could be angry and try to hurt them like i was hurting. In some aspects though I have to say you can only put up with some people bitchiness and attitudes for so long. And you try going in that office 2x's a month or more and deal with a bitchy staff. I might have been the cause for that bitchiness. But really if you can't hack it. Give it a rest. I can not help that you can't see kenadie's symptoms all the time and that it is not a prevelant thing at all moments and that she does not have a stamped diagnosis such as syndrome or whatever. But what I can say is that yes person x you did make a comment one day when i was on the phone with my mom. Maybe i misinterpreted it but i know one thing. I cant stand Joker faces! And I just found out there is a couple that I have been dealing with for a while. That is sad.. just plain sad. Hey if you are going to have a position on a certain important issue dont go to person x and be all down and then go to me and be chimey.. just not fucking right. Also.. let me be the first to tell you. I HAVE A POTTY MOUTH! Yes I know. Not a good thing for you to do and not a good thing for children to hear. But if i am typing it i am not saying it. So Yes I cuss like a sailor and if it offends any.. well sorry.

we have a date for ohio!

Hello all.. Please forgive my abscence. Trust me I have been so busy. Hmm where to start.. The diva showed her true colors a couple weeks ago. With a lovely hr of 42bpm while she was awke. So that bought her a trip to the cardiologist. He put an ekg monitor on her and it will stay for 30 days. What a pain I might add. But it will determine if it is all autonomic or if she has av disease. She also went to the ent doc and he said he wants to scope her throat to make sure her vocal cords are fine bc of the swallowing issues she is having. That is scheduled for january 16. Then we finally got a date for Ohio. Febuary 16-18. But that is subject to change. I want to be able to go when my fil can go. He is my rock support when we are out traveling. So we are going to see if they have another date when he is off work.
Right now.. she is having some issues. I think it is just too much for her. All the family visits, the shopping, just a bit of everything. I do forget that she gets hyperstimulated. But it is hard to just leave her at home with the nurse or a parent. And right now. Lord dont get me on our nursing. That could be a LONG ordeal! lol. I think with her going with me and stuff it keeps some normalcy I guess. But it is going to have to change. She is just not dealing with it. Not sleeping well. Crying alot. ugh.
Personally, it has been a bit tough lately. I am having my surgery on monday and wondering how the hell I am going to juggle it all. I am sure in the end. Everyone will be breathing and living. But I just dont know. Then I get the kind reminders everyday that my child is not "a well child". Wether it is her temp, her issues with hyperstim, purpling which i might add is a little funny when you are out and a stranger freaks lol, just those little things. I dont feel like I connect much anymore with those who I used to be able to connect with. I get easily irritated with people on small things now esp when it comes to their children. Like hello dont treat child x like that. You have a healthy happy child. Cherish that.. enjoy that! And sometimes.. I have this overwhelming feeling to want to go slap person x.. but that might not look good on me when i become a nurse. ;)

Angel ramblings

So this is a rambling post. I will wait to get back from the pedi's to discuss the diva. Lately my emotions are all over the place. The holidays being here are hard. Its hard knowing my son should be 1.5yro and he's not here. I seen some really cute boy toddler clothes and just longed to be able to buy them for my son. I see my relatives son and just have that tug. I sat and typed a text message to my godson's mom about how much he means to me and just cried.

I love the 3 children I have and I am so thankful for them. I thank God everyday that he let me have the 3 I have. But I do miss the one's I lost. The holiday season brings alot out in range of emotions. This would have been the fun thanksgiving and christmas. I see the joy that my godson's mom and dad have with their son and miss the fact that my husband does not get to experience that. We only get a paper that says our "embryo" was a male. I am not going to say I am jealous or not jealous. One thing that gets to me even though I know people are joking around is when they say oh you can only have girls huh?! We had discussed with someone about adopting through dhs in about 1.5 to 2yrs and they said oh you dont want to have any more girls huh. No you nip whit. I can't have anymore children.. It can KILL me. I think my children need a mother. :D
(was meant to be posted but forgot to push the post button! lol)

Feeling better!

Hello all. So I just had a talk with the hh agency. I feel so much better. I had posted previously and irritated based on just a nurses comments. So now I do feel better. Also I am looking for a support program here locally for chronically ill children. I definitely need that extra support. As for the pedi.. Well today we got new orders and NO i did not know about them. I wish she would tell me these things before my home supply company does! That is not cool. She wants to change her formula back to alimentium. NO NO NO NO NO! She has done amazing on elecare. Less fussiness, less everything. Why mess with the potion if it is working?! I know she is over 12 months now and they would like to see them on a different formula. But come on.. she is doing good. I swear sometimes they just like to see if it is going to mess her up. I know they dont but that is how i feel!
Ms K is doing descent this week. Few breaks off of her pump bc of her tummy. Tonight we had about 50 cc left in there after 3.5 hrs of having a bottle. Yah.. not yummy! I could tell bc her tummy was distended then i asked her nurse what time she last ate she said about 430pm. So nurse took off the extra off of her tum tum and she was ready to head to bed. We had one instance where the kiddo's hr went down on sunday. But we really do have a wonderful night nurse. Lord bless her soul. We wish we could kidnap her so we could have her all of the shifts. ;) I like to call her Gramma D. Funny thing is when i first met her she was very rough and i was nervous for her tobe in my house. But after giving her a chance.. Now we would be lost without her. She has been our main constant through all this mess. Lord do give her an extra gem in her crown. Plus she puts up with my venting at night. :D.
So as for the diva.. we are waiting on going where ever we are going. As of right now it is looking like ohio or nyu. Me personally.. I kinda would like to go to new york. Never been.. So it would be a nice thing. We are trying to get a definitive answer on the diva's diagnosis. If indeed she does have t his. What are we supposed to expect. What is her prognosis. I would love to know. But only God knows truely what our prognosis is anyways. ;)
We are on this horrendous rollercoaster ride right now. I have to say thanks to those who are supporting us through this whole endevour. Somedays its about all i have.