Hello! Missed you All!

Hello Everyone!

It has been a long time since I've written and I do apologize as it has been CRAZZZZZZY!!! Will, is still going strong alot more tired these day's and he's down to 140lbs it is scary to see him so thin! NO change on the SSI or Medicaid for him they say he's still not sick enough! Waiting to hear a date on our formal appeal before the Children and Family Services Board! Maybe if they see this skeleton of a man it might tugg on some heartstrings! Shelly I have tried to email you a couple of times but, either you didn't get them or I have missed your responce! So sorry! I've been having a difficult time lately! Will just announced his engagement to be married to his girlfriend! I'm happy he's happy but, his now fiance is creating alot of drama and stress! Her parent's aren't to thrilled about this as she is only 18 yrs. old and does not think she will be able to handle things when Will gets really sick!and they have said in conversations that she is walking in front of a speeding bullett being with Will and the she has no chance for a future with children and can't forget the part where he will leave her a widow at an early age! Of course we have tried to educate her on this disease,and told her she needs to do the same with her parents, but she doesn't seem to be intrested which kinda scares me ! All I can do is give them the benefit of the doubt and hope they will be strong for eachother because Will is in Love with her! Next month Will has to go back to Shand's hopefully we will get a good report! I will try and keep up but, can't promise! Know you are all in our thoughts and prayers!

 Huggs and Smooches,

Toni

Hi Toni, It is good to hear from you. You and Will are still in my prayers.

Toni

We all know how crazy life can be at times. I hope that you get good news on your upcoming hearing with the Children and Family Service Board. Have all your ducks in a row when you go with medical reports and any other documentation (letters from doctors and lists of all medications he takes). I know all of this is so stressful for you and your family. I am so happy for your son that he has found someone to share his love with. i wish for both of them the best.

Lucy

Toni, it is good to hear from you! I hope the problems with the prospective in-laws work out. I can understand their concerns, but they do need to be educated. Also, I think for persons with liver disease, it's a case of grab happiness where you can find it. It helps one deal with what's ahead. I hope the fiancee is very supportive of Will and also a positive, upbeat person.

Regarding Will's weight loss, perhaps he could get a prescription for an appetite booster? I know there are drugs that will enhance appetite...just can't recall the names at the moment. Also, Ensure or Boost would help get some calories and vitamins/minerals in him. I personally use Slim Fast when I'm unable to eat. It has about the same amount of nutrition as the other supplements, just less calories...and I think it tastes a whole lot better. Carnation Instant Breakfast is another idea.

Everyone I know with severe liver disease has problems with swelling/ascites. Is Will on any diuretics? I am on Lasix and Aldactone, which has helped a lot, but I still get a little swelling around my ankles at times. Will should be minimizing his salt intake, as it causes water retention. That means no chips, salted nuts, or added salt in the diet. Also, he should be aware of all the salt in canned and packaged foods, particularly frozen dinners and soups, and condiments such as pickles and olives. I know I've become a chronic label reader, and mostly eat fresh fruits and vegetables.

Take care, good luck with the hearing, and please keep us updated when you get the chance!

Hugs,
Connie

Hi Connie and Therese,

 Welcome back Connie, Hope you had a wonderful trip! I've been trying to get caught up! Thank you both for replying talked with RN and she said pretty much the same. That GNC carries a Weight Gain milkshake and She said Boost or ensure would be fine actually any high calories such as potatoes, pasta and such will help fatten him up! I am really having a hard time with this! My heart just aches so everytime I see him! He said last night that he had been feeling sick to his stomache! I don't want to be an OVER- reacting mother, I know Will knows his own body and he tells me I worry to much, but I see all the signs of this illness taking it's toll on him! I don't know if it is just maybe Ive gotten to much knowledge of this horroific disease that hopefully I'm reading more into it! I finally got a chance to talk with Will's soon to be Mother-in-law last week. That went okay I thought, until lastnight she called me and pretty much said she was giving me a heads up becuase she had just talked to the kids and will not be a part of this so called wedding as she feels her daughter is making a Grave mistake! She told Will it had nothing to do with him personally, that it is her daughter is not mature enough to make such an adult decision she will be 19 next month. I have tried to reassure her that Will and Anna have taken every precaution, and she is getting knowledge on his illness. Mom seems to think that she will bolt when times get tuff and that she will not be able to handle it nor should Will put her threw that knowing he could leave her a widow at such a young age with no hope for children! She told them both they should just end their relationship now! Of course that just makes them more bound and determined to proove her wrong! I told this woman that we have to give these two the benefit of the doubt that they are in LOVE and when times get tuff we will deal with it then that I'll be there for both of them! I even told her about Will's condition and she tell's me she had an Aunt that past from HIV about a year ago she knows it ALL! They are so HAPPY but, she's made them very sad!

Thanks for listning! I'm at my witts end! Take care Huggsand smooches

Toni

Goodmorning Connie,

You are up early or should I say late. Yes, I also have my concerns about this upcoming union but, I have to let these two figure that out for themselves. I'm afraid if I push the issue they will run off and elope and that would not be good! We still have time til Oct. to see how things go! Until then I will sit back and help when I'm asked and try and keep my mouth shut! We did ask them what the rush is? Unfortunatley, shrugged shoulders was the reply! Will has another Dr. visit in June and she will be going to find out what is going on in his world! I know he's scared and the drastic weight loss is of concern, my personal opinion is I think he's afraid he will be alone! And not have met some of his dreams and desires before he is to ill, they are living together now and that seems to be having some ups and downs as they are still getting to know each other! Yes, he is still working he has to because she doesn't like to this is her 2nd job in 3 months and the only reason why she's working now is cuz Will told her at this point he can not support both of them. He is working under the table with his dad but, if this formal appeal doesn't go threw soon with SSI he will have to go back on payroll as his dad say's he can not hide the paper trail for long! That will totaly screw him up again! But, he has to make a living in order to survive! I'm definatley pumping the calories I tend to make extra leftovers! Ziti, and speggetti are his favorites! He has been getting sick to his stomache lately, and that worry's me ! RN say's just monitor him until our apt. and keep them posted of any new signs!

Huggs and smooches!

Toni