Another Child

My husband and I are thinking about having another child. Our first one has had a lot of issues, Aplastic Anemia and has been sick for over a year. I was in the hospital for an entire year and left the same day that he went in. I’m not getting any younger and neither is my husband and we don’t want to take away any attention away form our son.

I was fine with only having on echild but my husband wants to give him sibling that is closer to his age. Our son is 3 and right now i fee like I’m doing most of the work at home and he does his share at work. I understand that going to work is important but I also need help around the too. Having M.S doesn’t just make it harder to do things at home but if I’m not feeling well then the entire house falls apart. No one gets laundry, no gets clean dishes, no one gets clean sheets one their bed. Things just fall apart. I feel like if we do have anyother child that it will just get worse for me. My ultimatium is we are going to need a nanny. That way when things happen with me or my son I’ll have help.

13,709 Steps

I’ve been trying to work off the weight from the high dose steroids that I’ve been taking because they always make me gain weight and so far for the past week I’ve been getting longer and longer in my steps. It helps that my sister is in from Germany for the first time so she wants to see everything in and around Chicago.

Tuesday Oct. 24th was 10,796

Saturday Oct. 21st 7,859

Tuesday Oct 17th 7,414

Today was the most I’ve ever walked in a very long time and I’m happy for myself because even though I had no choice but to keep walking I did it!!

Fatigue

My sister best friend from Germany is here in the states and I’m not feeling that well. I got my period and my fatigue is through the roof. All I want to do is lay down and relax but it seems that this GSM like that are just dreams to be dreamt.

I want to be able of take her to the places in chicago that are the ones that she will never forget but my energy level is so low. I can’t have her go home without seeing the Hancock, sears tower, the bean and millennium park, not to mention the Adler planatrium and Navy Pier. It just seems .Ike there isn’t enough hours in the day to get things done. I don’t want her to go home and regret not seeing these really cool attractions. I can always take pictures but that will never do it justice. We do have planned to go to bengstons so I can take some pictures of Alessia in the pumpkin patch. I hope that it goes well and they have a good time. It seems like they are having a good time and being able to have time to the selves it also good. I gave her my Chicago purse that I got on Michigan Ave because I know how much she wanted a purse that said Chicago on it.

One week is too short to take them to do all the tho gsr that Chicago has to offer. Not to mention that my legs are in pain and the pain medicine isn’t doing what it usually does as far as relief. All I can do is have faith answer relax and not push myself so hard.

We are at Woodfield Mall in the play area and they went to get things to drink and I think to eat. I have my water so I’m fine. We have Veena taking so many pictures and videos of the kids that I think I’ll have to give Bianca a USB drive in order to give her them all. I have plenty of them and I can even five her more then one if I need to.

She wants me to takes pictures of Alessia at the pumpkin farm like I did with Sawyer in the pumpkins. I just hope that the ground isn’t to wet and muddy. I’m going to bring some blankets that is can get dirty so she can sit and not get her clothes all messy.

We have so many things to do t hi so week ans we are cramming a lot into each day and I feel so drained by the end of the day.

Yesterday I wanted some me time so I could do some of  your pictures but Kevin wanted to make a routine so we got jo spend time together. I just don’t understand how a routine will help when I’m with Sawyer all fay and barely have to do any pictures on my own. I’m trying to make money for our family and if I can’t even carve out time for that them there really is no point. I have 3 diplomas and I want to be able to use them. I put a lot of hard work into getting those, even with staying up late and trying to find time to study and take the tests isn’t easy. Kevin has said to me that he is very proud of me for taking classes and bettering my future in photography, now all I need is clients which I hope this class that I’m taking now will help me get there. I’m taking Digital Marketing, which I hope will let me find out what I’m doing wrong in my business. I took some of the tests and didn’t do awful so I feel like I have hope. I just need to make time for the class.

Does anyone else feel like they put too much onto their plate and the  have to juggle it all and hope things don’t fall apart.

 

Can’t sleep

I take medication that helps me sleep and for some reason I have been up about every hour since I  went to bed at midnight. I roll over and look at the clock and it says another hour has past and roll over hoping to see the sun the next time I roll over.

I’ve been walking almost daily to get my muscles stronger and to make me tired at night, so much for that! I hope that I’m not the only person that this happening to because that would make me feel even worse.

Does anyone else have this issue where you just can’t sleep to save your life??

This sucks, because we are having our 5 year anniversary party tonight and the last thing I want to be is tired!!

We still have to get decorations for the venue and make sure we have an accurate count of people.

This sucks, because we are having our 5 year anniversary party tonight and the last thing I want to be is tired!! We still have to get decorations for the venue and make sure we have an accurate count of people.

Relapse from Multiple Sclerosis

When we finally moved in with family to help us out with finances I ended up getting this awful flare up that was all over my body. My left and right side are numb and I was scared that this was going to be the end of my going back to normal. I had an MRI which showed a bunch of new lesions that was very upsetting and all I could was try this new medicine that was a steroid but didn’t give the awful effects as regular steroids. It ended up costing 30,000 but I was able to get some samples but it didn’t really take away the awful flare up effects. I was taking a shot in the stomach everyday and it was not what I expected.

It was strange that as soon as Sawyer got better then I got really sick. I’m hoping things will get better because I was doing better when he was sick. I guess it was a mother’s determination to stay strong while my son was sick. I’m glad that I’m finally on steroids that will actually help, now on a taper dose and will possibly start taking a new medication that has been getting really good reviews.

All I ask is for prayers if you pray and if you don’t wish on ask star for me. Any help is always welcome.

Aplastic Anemia

My son was diagnosed at 18 months with Severe Aplastic Anemia and it was an awful thing to hear. That same day my husband lost his job and we started our journey to save our son. He was a very active son and was very outgoing. It seemed like the world had just stopped and we lived downtown at the Ronald McDonald House going from the hospital back and forth switching each to sleep in the hospital bed and the room.

They started him on AGT but it didn’t work so our only option was to find a bone marrow donor and even though we saved his cord blood they said it probably wouldn’t be the best option. We didn’t have any matches in the family so we had to go to Bethematch.com and find one who fit him. We were very lucky because we found a young lady that was an 8 of 8 match the best that we could’ve asked for.

He was scheduled for chemotherapy to get rid of his old immune system just before his 2nd birthday and we had a party that was a big deal because we didn’t know if he was going to make it or not. He got some really good gifts and it was a great day for even though he was so thin and you could see his bones.

July 23rd was the day the bone marrow came and the doctor that had proven that this was going to work was there to watch the event happen. We watched and took video of the entire event. Now we were at the point where we just wait and hope that things go smoothly.

To make things worse we had to change hospitals because we didn’t think that he was getting the best care and talk Loyola although he did good care we were grateful for all they had done.

He had spent an entire year in the hospital and was released the exact day that he was admitted which Kevin and I didn’t think was a coincidence. We were just happy that he was finally going home. It was a hell of a year and we hope that things are behind us.