here we go again............

One of these days and hopefully soon, this will be back to my normal upbeat thought provoking blogs. But for now, it is simply our health updates and such. I returned again to the surgeon today and they removed another 150cc's of blood from my hematoma. I now have orders to come back on Thursday to remove more if need be. They put me back on muscle relaxants and pain killers as the discomfort wakes me up at night and the inability to stand up straight should have eased by now. They think it is from the pressure of the hematoma and will now stay on top of it so I do not fill up will fluid that causes the extreme pressure. I even busted two stitches from the pressure. but was again the relief from the aspiration was wonderful. and hopefully I can sleep all night tonight.
The doc said when I am released to do things again, I should start seeing significant changes in my swelling and size. He said until I can get out of the bed and move around I will not see much progress in the actual decrease of swelling. But until the hematoma is gone, I am still restricted.....not even allowed to pick up Danielle yet. This is getting old. He said it could take 6 to 12 months until I lose all the swelling. UGH that is a long time.
Zoe's med has been increased by .5ml to 2ml twice a day. So far no seizures in the last two days so hopefully she will remain stable on this. Attitude is still an issue but she likes the taste of the medicine so taking it is not a problem we have to deal with. At least that is something.
She turns 4 in two weeks and wants the Princesses for her birthday. I think we plan to indulge if I can find a decent priced hotel with breakfast as Disney has great deals including free tickets for the military these days We do not want to look back and say we should have. I know Sudep is rare but odd that I know someone who has lost a child to it only to have my seemingly healthy child diagnosed with it just a little over a year later. I think that will always sit as a what if on my shoulder and influence my decisions with her. and to think we actually met when Jack was born and she needed a breadmaker as he had food allergies and she had to change their diet some so she could nurse. Funny how God brings people into your life that you need and how when you are open to the little things and nudges from him, your world expands. I did not wish to give up our breadmaker but we really only used it occasionally and I felt she needed it more. My heart just burst with the fact that she was doing this for her child. I loved that about her before I even knew her. and now that I know her better, that is only the tip of the iceberg Jenny is one of the most special people one would ever have the priviledge to know.
so anyone want to join us on this special trip for Zoe? It is an open invitation..........

Results

We received the call about Zoe's MRI. It was normal. So what does that mean exactly was the question that blurted out of my mouth. The response was, it means there is not a tumor or abnormality of the structure of the brain or surrounding bones that could be causing it and it confirms she has Epilepsy. Deep breathe........Okay. So what is next? We will look into upping her dosage and will see you next month for your appointment.

so folks, does not look like we are going to slip out of this any easy way. PLEASE keep us in your prayers. and I am not saying that a brain tumor would have been easier not by any means.....now we appear to be in it for the long haul. The mood swings may get the best of us in the meantime. Thankfully John is here and anticipated to be home with us for the next several years and if we can continue to balance each other with dealing with these times it makes it easier. She tends to pick one person to blow up at and the other can work her out of the mood with time and effort but it is exhausting. For instance last night she decided she did not like Turkey Casserole or anything in it. Not cheese, peas, milk, turkey or noodles. John was trying to encourage her to eat and she kept wanting to put the white things (her noodles) on his plate. Which he did not like and she was fever pitched that they were not going to remain on her plate to taint her food. He got up to get her some milk as it got knocked over by her fork and her mood switched. Eventually I showed her samples of everything that went in there and had her test it to see if she liked it. Wish she did. She ended up eating about half of what she was served but this was after everyone else had left the table and it was just she and I. But this can happen with taking off pajamas, to brushing teeth, to going in the car. and you can see the change of facial expression happen too. I have never seen anything like it. Sometimes it is John she blows up at but mostly it is me when I ask her to pick up the toys she was playing with or go try to potty, etc.. All of this started after her Grand Mal on Veteran's Day. It has been a long couple of months.

Give Them All to Jesus

The attached is a link to a song I grew up singing along with Evie Tornquist Karlsson. She recently sent me a new CD that held many of my favorite OLD songs from her on it along with a few new ones she has written along with her husband Pelle. The last week or so I have needed to hang on to the words of this one in particular as my heart breaks at times for my Zoe. I do not know what the future holds for her but she is HIS and HE has a plan. Epilepsy can hold her back from a few things but the things that matter most should not be affected by this disorder. She likes to pray but when I tell her that Jesus loves her and that God made her special and loves her very much. she says I know but I do not love him. Not sure why she does as being 3 she loves our Bible time and she likes to pray so not sure what that is all about. But it concerns me. I want nothing more for my kiddos then for their heart to be centered on the things of Christ.

home again, home again

wow, let's see. The past two weeks are a blur. Mostly drug induced due to the surgery but also cause it was a busy busy time. Zoe had her full MRI....no results yet and I am not waiting patiently but nothing I can do about it. Seizures are happening mostly on the right side now....they have slowed down but still happen occasionally so medicine has been increased which increases her personality. OH JOY!!! We spent two nights in a hotel up in Savannah which was really really nice and it helped keep our sanity and saved us from exhaustion as we had been told Zoe needed to be sleep deprived on night one for her test. We went to Chuck E Cheese until 10 then swimming until midnight. Well I observed as I still have open wounds but I did sit up with them. This was the same night they removed 360 cc of hematoma from my right breast and I was feeling really good. Zoe did awesome at her MRI, she did not even flinch when they gave her the iv. She did not like being put to sleep and fought it though. The same look she gets when seizing crossed her face and it disturbed me but she quickly relaxed and all was well. We returned home on Thursday took Ken to her breathing test to see if Asthma is still an issue and it appears that at least while in the South it is not or she has totally outgrown it. YEAH!!!!!!!! Some good news there. We returned to NC to retreive our vehicle and had a good weekend. I did too much walking on Saturday as I accompanied Jenn to register for her baby shower. I did experience a Five Guys burger and am now hooked. Wish we had one here locally though. It was YUMMY! On Sunday we drove to Tim and Chris's in Charlotte..........only a two hour drive and we planned on having lunch with them and to leave after that to head home. Tim convinced John to stay overnight so he could watch the Steelers play. So we were able to really catch up in person. Leah and Kendra took off to do girl things. They have been friends since they were 3. and Janay took my littles under her wing. I remember when she was Danielle's age running around the yard naked giggling. She thinks it is cool that Danielle has her name as her middle name. I spelled it differently as the spelling made a bit of a difference in the meaning and I wanted it to mean gift of God solely. but in essence it is the same name. So Monday we made the trek the rest of the way home and I still am recovering. I went back to the surgeon today and next week he will remove even more hematoma. I knew I have felt discomfort this week and that all did not seem out of there. Evidently he expects to remove as much as last time next week if I am a good girl, take it easy, massage and keep a heating pad on it. I also was told to keep my feet up more. The rug burn sensation around my tuck line at my hips is scar tissue stretching and from nerves waking up. The swelling is starting to go down and hopefully will disappear totally tomorrow. Okay I know that is not realistic but a girl can hope. The size 6/8 pants are actually not as tight as they were. I doubt that will be the size but again I can only hope. John said honey, do you think since you have been wearing them for a week they might have stretched some? After receiving a dirty look he kept quiet. They are biking pants and do stretch but even after coming out of the dryer they honestly went on easier. I did not have to pull up as hard to make sure the torso went into them. It felt kinda cool. Give me my moment people.............I have not since a size 6/8 on this body in many a year. Probably the last time was when a I was 8 and it had a kids brand name on it. or it had a 1 before it. So now we are home again and waiting for the next wave of activity to hit...............John returns to work tomorrow so hopefully a schedule will soon fall back into place.

MRI, breathing test

not sure what happened to this long post.......................but I see it came in blank. I will mention it in todays blog.

360 cc's. Wow, what a relief!!!!!!!

Well, today I saw the surgeon and to my surprise he said it had liquified enough to drain some. I was totally convinced it was harder than ever and he was going to be put me off again

but much to my surprise he said nope we can drain some and look again at it next week to see how you are doing. Well after 4 vials full of hematoma I asked how much more is in there? He raised his eyebrow and said more than you would think. Two more vials came out and he said that does it for now 360 cc's total. Which meant not much to me until I converted it. The formula from oz to cc is as follows;
1 US fluid ounce = 29.5735296 ccso
8 US fluid ounces = 236.588237 cc

so it is about a cup and a half of liquid. That meant more to me and would explain the pressure and the I don't feel well symptoms that resembled the flu. No wonder I could not get comfortable enough to sleep. But the relief was immediate and I already feel tons better. I ache tonight but I have done too much today. We are on a marathon to keep Zoe awake and sleep deprived for her full MRI tomorrow. After my doc appt, we did a quick run to Sams, then to TJ MAXX (as I am now allowed to move from my binder to tight biker shorts and top) then to Chuck E Cheese as we have accumulated tokens and thought since they closed at 10 that would be a good late night activity for everyone. Then on to the hotel and pool which stayed open to midnight. and now we are doing all to keep her up till 2 as she may only sleep a total of 4 hours before the test. Breakfast opens at 530 so off early to it we will be, then swimming again. Her appt starts at noon so it will be a long night and morning.

But back to the biker shorts and top. I was told to get them tight like I poured myself into them but can still breathe. I have been trying on and weeding out clothes this week and appear to be comfortably in a 12/14. However, the biker pants are a 6/8, a medium and they look tight but not digustingly so at least that is what hubby and Kendra said. I asked Ken, would you be embarrased to be seen out in public with me and she said no. So it can't be too bad. I think the last time I saw a 6 it had an x after it and I must have been 8. I doubt that this will be my true size in real clothes but who knows.............maybe one day......... Please say some prayers for Zoe.

Ultimate Romance

Divine Romance is a product of divine love through its service. True love is not so much a matter of romance as it is the concern for one's well being of ones companion. It is an intentional action to cultivate, express and repair love within a relationship. My husband despite my recovering torn up body has made me feel very special this past week. Not only has he held me while I cried, but has cleaned wounds in not so pretty places, taken pics at my request to document my healing so I can visualize that I am actually healing, has catered to my cravings at odd hours, has reminded me daily that he enjoys my company by just hanging out near me, by tracking my meds and fluid levels and taking care of the kiddos. But tonight he went above and beyond, Kendra wanted to sleep with me tonight. She wanted to be on duty if I needed anything during the night. He also wanted to be there so they got into a she was my Mommy first, but she is my wife. Type banter, not a bicker really as neither got nasty about it but I felt in the middle as I knew it was going to be up to me to decide. I simply made the comment I really feel in the middle here, I wish we had a King sized bed honey." To which he replied "don't it is okay, I will sleep on the couch and I will have my phone with me, call me if you need me." How romantic is that? He knew I felt bad and gave of himself knowing it was not going to go his way and he was not going to sleep with his wife. Honey, you are awesome. Thank you for that. I love you. That was so much better than a box of chocolates and you know how much I love that!

I'm done

I almost forgot to post the cutest thing I have heard in a long time. Danielle's crib is near the door to her bedroom and she can reach out and open it. This morning when she woke up, she reached out and opened the door, pushing it hard so it bounced against the opposite wall and from the sounds of it came back at her so she did it again. Then she calls out, "Mommy, I am done. Mommy, I'm done." She repeated it about three or four times until I roused John and sent him to get her as I still am not allowed to lift her. I thought it was just the cutest thing........

and an update on Zoe is in order too.
She has had two seizures both while asleep but not bad ones since she started the meds. Seem to be helping some at least a bit. One of the side effects of the meds is to increase her personality. We have seen some of that where she keeps at something. Today she wanted ice cream. We told her after she picked up the books she took off the shelf. Well she did not help her sisters pick them up so no ice cream. Two hours later she is still talking about ice cream. and for two solid hours that was all we heard about. Do we give in to shut her up as both John and I are going crazy and losing it at this point or teach her she gets her way? Gotta tell you I gave in and John went to buy milk to get away from her constant whining about it. It was way beyond the normal as I could not get her to do anything else she liked. She focused on that and I could not get her focus off it for anything. Even going to the store with Daddy was of no interest. We go for a full MRI this week on Wednesday so we will know more as to what is affected after that. I guess that is it for now.

Kendra has been awesome and is growing into a beautiful young lady. We bought ProActive for her as she had bumps but not pimples and in three days her face is completely smooth. She has lost some weight in the last few weeks and looks awesome. She has started being very creative the last few days and I like that she can entertain herself.

Genealogy, bruising and sounds of sloshing

To keep me occupied my husband pulled out the genealogy that we started several years ago that his brother saved to floppy discs..............which are now just junk since none of the computers in our house use a floppy. I, at one time had 5000 family members researched and connected to the tree but then hubby went to Korea and I had my gastric bypass, then Miss Zoe joined our family and it never got picked up again. We had purchased copies of birth, death and marriage records from my hubby's area of the country and so had a good place to restart..............John knew if he got me back into it my mind would get busy and I would keep my butt still and in bed like I am supposed to be. I so hate not getting up to do things..........or being able to pick up a toy or something that has been dropped on the ground. For instance, on two different occasions of my getting up and moving around I have seen a strawberry hull on the floor in the kitchen but can I get it NO can I ask someone to pick it up yes, but I feel like I am constantly asking them to do more pressing things like change the baby, get me a drink, help me to the bathroom, put the kids down for a nap, give meds to the kiddos, etc. The strawberry hulls will still be there and are not hurting anyone just driving me nuts knowing I usually take care of those little things everyone else seems not to notice.
I have seen every color of the rainbow on my body from black, red, purple, gold, green and blue. It has been a very colorful week. Itching like crazy which I can only take as a good thing and when it gets too bad I give in take a benedryl and sleep for a bit. The sounds of sloshing sounds awful on the left side when I move around but is exactly what the doc wants to hear...........it is the liquid inside that he hopes to drain on Tuesday. I hope the right side sounds more sloshy soon. Only 48 hours to my appt.
John is happy as he just gave me an update and the Steelers are winning.

blood clot, itching and lots of sleep

Okay, folks here is a quick update. I have a hematoma the size of an orange possibly now a grapefruit. The doc was hoping to drain it yesterday but it was still solid and had not liquified enough to drain yet. So I go next week to hopefully get some relief from the pressure it is bringing to me. Other than that I have some major itching from healing which is a wonderful thing. The doc gave me some basic bendryl for that as at times it gets so bad I could scratch open my stitches and not even care just to have some relief. It seems to have done the job but has made me rest a lot more. He fussed at me for not taking the muscle relaxants and pain pills until I feel the pain........he said to take them every 4-6 hours to ward off the pain. Personally I do not like to take things until it is needed. Being a mom of three, I do not want to chance any addiction to anything so only as needed is my goal. I think once the pressure is removed from the blood clot I will not feel any pain just some minor discomfort which is no big deal. I think John has a new respect for me staying home with the kids. They are driving him nuts as he can not keep up with them and the laundry, dishes, diapers, feeding and medicine schedules, etc. He says he is anxious for me to get better so he can go back to work and relax. Overall I think he is dealing pretty well ........he just has a new appreciation of what my days entail and that is a bonus!!!!!!!!!
ok enough for now.......I am sleepy again. Love you all. Jerri

Cocktails, tears and full heart

Every 8 hours, things line up that I take 4 meds together, and the concotion starts me to tears within minutes. I do not feel sad just very loving to my crew and grateful for such a great hubby and kiddos. Now I may feel differently if he were to be deployed or if things were not good in our marriage or if anything were not right within our family but I am blessed that all is well. So I would not say this is depression by any means just emotionalism. I have taken this opportunity to have him hold me and take the girls into my arms and pray with them while in this state. I do not look forward to that 30 minute tear session but know hubby is here to hold me and let me cry it out in his arms. One of the 4 meds I quit taking this morning and another will be completed by morning and so hopefully my cocktail of the remaining two will not cause this reaction. I see the doc on Tuesday so all changes can be made then. Heating pad is now my friend for my right side as it has more swelling than the left. But overall I feel I am doing well. Still keep us in your prayers.
so a bit of a followup.............we ended up at the doctor's a day early as that little bit of swelling turned into a blood clot the size of a..........no not marble, not golfball butthe size of a orange this morning! and tender to the touch. Ended up he removed so much from that side that the blood had pooled and he debated to put or not put an extra drain in but thought well in less than 1% will we have problems. Well guess what I fell into that percentage pool so on Thursday after warm compresses continuely to help liquefy my orange he plans to drain it. I think the pain would be very very minimal otherwise. I feel only slight discomfort in the other areas...........
on the plus side today...............I bought some new undergarments and am pleased that I can when all healing happens wear pretty, frilly colorful items no more grandma bras and panties for me. but in the meantime sports bras with no seams are a comfort item.............and come in many pretty colors too!!!!!!!!!!!!!!! not just black, beige and white......but turqouise, hot pink, and red!

Home and moving around

okay ya'll ..........I am home and moving slowly. I do not feel too bad but sore as expected. They removed twelve pounds total from the front of me and all parts are back to where they belong. I am rather swollen and have no clue as to what size I am now but there are no rolls of anything and I feel lighter already. I am anxious for the jp drains to be removed as they are never any fun. Can not wait to post some after shots but since I am limited in my wardrobe these days I will spare you..... Looks like a shopping spree in February will be happening. YIPPEE!!!!!!

addendum: at 2am while unable to reach my pain killers and suffering in silence as hubby was asleep on the couch, I discovered the doctor totally removed my belly button. He was supposed to move it but as confirmed at 7am when I called the house phone to wake up hubby as I could not take the pain or the suspense of do I or don't I? did I know for sure. I no longer have a belly button and man does it look weird!