Brayden and more

I am sorry. I know I am the worst blogger in the whole world. Not to mention, the worst at keeping you all updated on our little one. But I have good news!! Brayden has had hearing tests again, and he passed with flying colors!!!  Woo hoo!! Sooooo happy about that. now we are trying to wait patiently for them to re-do vision testing.  From the photos I have seen of him playing with toys at the hospital, he sure looks like he CAN see what he's grabbing for. However his left eye is "not quite right." But it could be a lazy eye, or, he may not see well in that eye. But it seems as though he definitely has more sight then they ( the docs) originally thought. So, I am praying that it is true- that he does have vision!

Today is his birthday- Six months old! And now weighs 13lbs, so he is growing!  :) He needs one more surgery- to fix his cleft palate so he can eat normally, but they want to wait til he's a year old to do that. So, he will still be tube fed for a bit. He still has the traich tube in his throat and the vent, and he will come home on the vent. And right now he's ready to come home except for the fact they need a home health nurse, and we live in a small town and the  are trying to get round the clock nurse care for them. Ugh. I wish he could be home already!!!

In other news, I am still plugging away at organizing the new house. My office-craft studio is still a mess. I hate that, but not much I can do. I have been sick for the last 3 1/2 weeks, and thought I dodged pneumonia, but I'm not so sure right now. Gotta go to see the doc at 3:30. I'm still short of breath- and don't know if it is pneumonia now, or if I am in congestive heart failure again. I guess I will find out! Will post again after the doc if I can. I could really use some prayers right now!!!

Happy National Chocolate Day!

Yes, it really is National Chocolate Day. But of course for me, the queen of chocolate, it is always chocolate day. Why do we need a special day to enjoy it? Life is short! Enjoy a little bit whenever you want!

A couple of days ago a package arrived from Holland. It was a nice surprise as I wasn't expecting it. Aunt Wes sent gifts for Brayden and sweets and treats for the adults. Greg was surprised that even he recieved something from Wes since she is the auntie from my ex. And she enclosed yummy Dutch chocolate for all of us. And believe it or not, I have not even nibbled on it. No thought of even touching it has crossed my mind. And that can only mean one thing..........Yep, I am SICK.  :(
I have decided that this will be the last year I get a flu shot. Every single year, I get sick a few days after getting the shot. I have had docs tell me the shot does not make you sick, that it's coincidence. Bullshit. It happens to me every single time. My immune system is low already from my other health issues, so I can't help but think that plays a big part in it. Been to the doc 3 times in the last two weeks. Yesterday got a last ditch effort steroid shot to help with the inflamation in my lungs, and heavy duty antibiotics, with the warning that if I was not feeling any better today, I had to go back. I know all too well that meant hospital. Ugh.
Luckily, I am feeling a bit better. Actually got out of bed at noon and did the few dishes in the sink. And then tried to do a bit a vaccuming, but that didn't get too far. Too short of breath! Sooooo, the carpets will have to wait a day or two more. They don't look bad. I'm just really anal about keeping the floors clean, and the furniture animal hair free.

I got totally chewed out at the docs office. She said I have to cut down on the stress and stop worrying about everyone else and start taking care of myself first. Hmmmmm. Seems I've heard that before a few times somewhere. ;)  But, that's never been me, and I highly doubt it will change at this point in my life. But I see where doc is coming from. After all, she can't exactly help me, if I don't make some changes myself. So, I will have to lay low for a bit to get over this I guess.......

We did have Chris and Tiffany over for dinner on sunday for his very belated birthday dinner. It was a nice evening. Chris opted for chicken fajitas and I made a cake too. (sunday I was feeling a bit better, but my body was playing a horrible trick on me) I hope the kids don't come down with it........

Well, that's all I have this time. I hope you all are well! Love and blessings!   Marlene

Aren't we done yet???

No! We are NOT!!!! I am sick to death of moving. It seems as though I just did this not that long ago, but  I guess it has already been 7 years since I moved to Arkansas. It's hard to imagine it's been that long really. My niece and nephews are grown now as I see on their FB pages, and my boys are as well of course. I am sure my sisters are just as surprised when they look at Chris and Joey's updates. Time really does fly by when you're not  looking, doesn't it?

I do miss my family back in Illinois. I wish I could go back now and then for a visit. But travel that far is out of the question for me. I hope that maybe I can talk them into coming when I'm a bit stronger. This last hospital/infection fiasco has my butt dragging still. I can't seem to get my strength back. I'm sure my heart problems, CFIDS and FM are not helping it any. The worst part of not feeling well now is the fibrofog. It's magnified about a thousand times now and I can't think straight. It's even getting hard to manage my meds myself. A couple days ago I double dosed my heart/blood pressure meds and made myself sick. Greg totally freaked out. I now have to have one of those things to separate the pills by am and pm so I don't get messed up again. It's never been an issue to take my meds. But now I can't remember things and when the kids talk to me it's like I'm on another planet or something. Ashley told me Brayden got his stitches out and I asked what stitches? DUH! They fixed his lip last week. I knew that. This CFIDS and FM has taken away everything I was able to do physically. Now It's taking away my mind. I imagine this is in a way what elderly people feel like when their "brain power" starts to go. It's almost impossible for me to have a halfway intelligent conversation sometimes. I can't even get my brain to focus on what's being said, let alone join in.

The kids laugh when I'm having a major case of the stupids, but to me, it's no laughing matter. I hate it. I feel as though I am losing all control of my body and mind and I can't fix it. It makes me sad. It makes me cry. I don't feel like myself anymore, and some days I find myself having quite the pity party. I thank God every day that I have Greg. He always helps and supports me and always seems to know just when I need him the most.

Time to "change the channel" as Aunt Wes would say.......
Update on my little man Brayden. He had to go back in the hospital. I hate that. But he was having some respiratory distress. But, he is doing well and we expect to have him back home in no time. Please keep our little man in your prayers. And I have laundry to do and a kitchen that needs cleaning, so that's it for today.
I know I am waaaay behind on emails. I have not forgotten you. Just got internet hooked up at the new house last nite. I will catch up in a day or so. Please email me rather than message me on FB as I don't get on there as much these days. I do check emails every day though. Keep the notes and jokes coming. They brighten my days! Love and hugs to you all.  Have a glorious and blessed day!  M

Our Little Miracle is Home!

Oh joy! I finally got to hold Brayden. And I had a real hard time letting go when we had to leave. The kids were terrible and didn't tell me he was coming home yesterday. Somehow they talked Greg into keeping it from me and to bring me over to their place to see him. So Greg asked me to go with him to look at a possible tree job. So I said sure. I was glad to get out of the house for a bit. I asked why he needed the camera and he said the trees that he needs to cut are close to buildings and he wants to have pictures to look at to weigh his options on what is the best way to take them down. Well, I had not yet been to Ashley & Joey's place, so I had no idea whose house it was til I noticed Chris & Tiffany's car and then Ashley's car in the driveway. Joey and Ashley had been in Little Rock for more than a week as Brayden had surgery on tuesday to put tubes in his ears (for drainage) and they repaired his cleft lip. And I had no idea when they were going to be home.

What a wonderful and amazing surprise it was that they were home. Finally! Two days short of 4 months in the hospital. And of course I cried when I held him. Tears of joy that this little one is HERE. And tears for the tons of medical equipment all over the house. And tubes for breathing and feeding, etc. It was very overwhelming. I pray everyday that he will get stronger and healthier so he will not need the tubes and monitors, etc. The kids are amazing. Know just what to do, and how to care for him and all the equipment and meds. I am sooooo very proud of them. They have matured in so many ways. And it is obvious how much they love Brayden.

When I got there Chris was holding his little nephew. What an awesome brother he has been and always is there for Joey and Ashley. And Tiffany was able to take a break from her studies (nursing) and was there as well last night to welcome Brayden home. She has been a tremendous support to them as well.

Brayden is a handsome little guy. Adorable chubby cheeks.  I have some pics of me holding him and I will post them a bit later. (don't have a clue where the cord for my camera is at the moment!) But I have to warn you. I still look terrible. So don't be shocked when you see how awful I look. I still look very sickly, but I am good. I am getting stronger every day. Just like my little man Brayden.

New Stuff

Has it really been more than a month since I have updated? I am probably the world's worst blogger.
Well, I'll try to get you all caught up on what's been going on.  Our little Brayden will have another surgery on sept 7th to fix his cleft lip. Then, he will come home. Finally!! He will be 4 months old by the time he is discharged. He had surgery a few weeks ago for a traich to help him breathe. The doctors are hopeful that he will not always need it-that he will get stronger and will be able to breathe on his own as he gets older. Joey and Ashley will go back to Little Rock for the next two weeks to care for Brayden until he is discharged. Oxygen tanks are stored in his room, and the kids are making room for all of his other medical equipment. Finally I will be able to see/hold my little grandson, and I just know I will bawl like a baby when I do. Please keep Brayden in your prayers- and mom & dad as well.

In other news, we are moving. We decided it was time to downsize. Buisness has been horrible for Greg this past year, and it has been a struggle at times to keep up with the mortgage on this big house. We don't even use the upstairs since all the kids are out on their own now- so why on earth are we paying for a 5 bedroom house when we only use one floor? It just makes sense to go to a smaller place. There is sooooooo much to be done/repaired on this old house that we can't keep up. And I can no longer do the outside stuff, so we needed a low maintenance yard. We found a nice 3 bedroom ranch style house. It has one and a half baths, and a den. And thank God no stairs to do the laundry. (For the past year Greg has been doing the laundry cause I cannot get up and down the stairs anymore.) 

I have been going crazy trying to get the packing done and the room that's taking the longest is my office/studio/craft room. I found stuff I forgot I had! Still have alot to do, and I'm feeling a bit overwhelmed. Have to take lots of breaks and nap a while each day to get my strength back. But, in a few weeks, it will all be over and a new adventure will begin!

I will email everyone with our new address soon. I hope you all are well!  Love and hugs- Marlene

Brayden back in ICU and other news

I'm so sorry I haven't been updating more often. Truth is, I just haven't been able. My frame of mind has just not been in the right place. The last month has been very difficult to say the least. Between worrying about Brayden and Ashley & Joey, and Chris having to go for heart tests, and then my 2 surgeries and infection, I am truely worn out.

We had so hoped that Brayden would have been home already, but he had to have surgery again on monday. He was doing well the last couple of days and no sooner did the kids make the long (almost 4 hrs) drive home for Joey to go back to work, the hospital called and said Brayden was moved back to ICU. He is not doing well again- heart rate plummeted, and he is continuously vomitting so no formula again. Was on room air, but having difficulty so now back on oxygen. Over the last few weeks he has gone from over 9lbs to just over 6. Our precious little one has turned 2 months old on the 11th, and still I haven't even been able to hold him. I just hate it. But I can't do the long drive, and I have been warned by my doc that my health just can't take the stress of it. And everyday I am torn. I want to be THERE. I want to be there for my son and give him help and support. I want to see/hold my little grandson, and my heart is breaking because I can't. Last night was a bad night. Joey had called earlier in the day and said that Brayden's vision was tested again and he IS blind. Maybe can see shadows, but that's it. Why oh why did they say the exact opposite not so long ago? It pisses me off beyond belief that those poor kids have these incredible ups and downs like this. Can't they make up their mind? IS he blind or ISN'T he?!?!?!

They also tested his hearing again and no reponse on one side, some response on the other. And let me tell you, I bawled like a baby most of the nite. Gave my son a pep talk over the phone about hearing implants and miracle eye surgeries that happen everyday. Told him how he has to concentrate on the things Brayden will be able to do, and not what he cannot do. Yadda yadda and so on. Then I got off the phone and bawled like a baby........

Sorry, can't write more about this now. I have to collect my thoughts, not to mention myself. I cannot do this without getting incredibly emotional at the moment..............
Please keep Brayden and parents in your prayers. They need a miracle.

We lost a dear friend 3 days ago. While I am sooooo sad that Mary is gone, I am glad her pain and suffering is over. She has been ill and on dialysis for several years. Mary Folmer was 76 and like a mom to Greg and I. She would call me up and check on me and ask how I was feeling when she herself just came home from dialysis. She never complained. Never. She and her husband George were married 54 years. They've known Greg and his ex for many years, and I was worried how they would except me. But they accepted me and my boys, and have been dear friends since. I will miss her terribly. Rest in peace my friend. One day, we'll see each other again!

On a better note, my "wound" is healing at the present time. The wound vac is a pain in the ass, but I am thankful for it. Several times I had problems with it and this weekend ended up having to call the nurse at 4am as there was a leak and I was in PAIN as the vac would not stay on the setting it should have been. So the poor nurse had to show up at my door in the wee hours to re-do the damn thing. Turns out the dang thing wasn't working right for more than 12 hours when the other nurse came to the house and changed the dressing. I asked her about it because it didn't feel right, and she assured me it was fine. Well, it wasn't. My skin is a mess where the "drape" covers the skin to make the seal. Basically the drape is a very sticky piece of clear tape about the size of a sheet of paper. Because of the leak, the fluid being vacuumed out of my wound got under the drape and caused an infection in the skin surrounding the wound. So yesterday when I went to have it checked at the wound clinic, the surgeon said no wound vac til the skin clears up or I'll have an even bigger problem than the wound itself. So now, the nurse will come to the house daily to check on me & take my vitals and change the packing/dressing. While it's nice to not have the wound vac with all the tubing, and cord, etc. for a bit, I'd really rather have it since it was working! Geez! How on earth does this weird crap always happen to me? Just a simple 2 inch incision from a biopsy has turned into a fiasco......

I have been working on some new things on my website. Vintage stuff. I have always loved victorian style, and have been trying my hand at some different ideas. I have some christmas things done and will hopefully get it on the site in a day ot two. Also have opened a shop on etsy and will have some vintage themed- hand crafted things for sale posted soon. I'll let you know when it's up so you can take a peek.

I hope you all are well and enjoying your summer. I promise to catch up on emails very soon. And although it may take me a while to answer them all, I read every single one as I get them. So keep the jokes, coming- I need the smiles- and let me know what you are up to. I couldn't get through my days lately without the support from all of you!  Love and hugs!  Marlene

Emergency Surgery and updates on our little Brayden

Well, I seem to have lost a whole month. June was spent in a haze of infection and being very sick. The incision from the biopsy closed, but I had a major infection inside, under the skin. (Staph) I was on antibiotics, but it kept getting worse so when I went to see the surgeon's nurse, she called the doc at the hospital (he was in surgery!) and he said to get to the hospital NOW. So I did. Less than two hours later I was in surgery again. Doc cleaned out the infected tissue and icky stuff. The infected area was about the size of a tennis ball. I had to stay in the hospital for 3 days,to get IV anitbiotics, and then was able to go home yesterday. Now comes the very LONG healing process. Doc says it will take several MONTHS to heal. I have to use a wound vac as well. What fun! I have a tube that is wider than a pencil stuck in my breast and this tube is attached to a machine I now have to lug around with me 24/7. And this machine sucks out the nasty stuff. A home health nurse will come to change the packing & dressing, and I also have to go to the wound clinic 3 days a week. Good grief. You talk about pain! When I was getting discharged from the hospital, they had to take out the tube and packing from the hospital's machine and attach the portable one to me. The gauze that they packed in after the surgery on wednesday was stuck, so she poured saline in the hole hoping it would make it easier to get it out. This was my 15th surgery. Never ever have I had pain like I did when she was pulling out that gauze out of the raw hole in my breast. Honestly, I thought for sure I would pass out. And I get to do it again in a couple of days....... Oh Lord, give me strength please! So, I could really use some prayers pretty please!!

Now for an update on our little one. He is still in the hospital in Little Rock. Several complications and need for surgery again so he could not go home. We are very sad. So please please keep praying for our little one!!  And now I have got to get some sleep. It's after 5am and I haven't slept yet!  More later- Love & hugs!   M