Marilyn

[Nikki_Poohs Mom]

I MISSED YOU, TOO, FRIEND!!!!

I know I seemed to have faded from the loop after our move to Florida (we're now back in NC after 2 years) I did try to read when I could, but life got a little busy for me. I went to work, spent some "catching up" time with my Florida Family, had some health issues of my own to deal with, spent a lot of time with my brother who went into rehab for his drinking problem and then his recovery, and then there's always been..........Nikki, DH, my 3 boy's and grandaughter. Sadly, I haven't been able to see my 4 y/o grandson since before we moved to Florida. We don't even know where he is :(

Nikki's pregnancy has been anything but uneventful. It is by God's Grace she's made it this far. Poor girl she's had the Hyperemesis and been on the Zofran the entire pregnancy. A shunt failure scare at 2 months, and another last week. If she doesn't go into labor on her own they are going to induce her next week. Her nsg wrote in his notes, "He expected Nikki's shunt to fail during the last month due to increased blood volume." She does have a great team of high risk ob doctor's at Duke. There is one assigned, but a total of 10 that watch her case weekly. They are also working closely with her nsg. She went into pre-term labor at 33 weeks and they had to give her meds to stop the labor which took us all for a scare with her heart. They also gave the baby steriods to develope her lungs. None of us (including the doctor's) thought she'd go this much longer (she's now 38 weeks 5 days) She's the cutest little Mommy-to-be! She lost 12 pounds early on and is now only 4 pounds above her pre-pregnancy weight. Baby appears to be doing well.

With doctor's never thinking Nikki would live or live without severe mental retardation, it's such a miracle that she will soon be a mommy herself. I remember wondering when she was a little girl if she'd ever be able to have children, none thought she would, and well........here we are! The day she was born doesn't seem that long ago.

How are you, my friend? I'm happy that Tonya is doing better than before, but only wish for pain free days. Praying her disability is approved.

http://i38.photobucket.com/albums/e101/bettysue66/blinkies/BearHugs21114.gif

Nina

http://snugglepie.com/cb/132687.png

http://img256.**********.us/img256/2910/428da27a51d0743f0db4fc27766c88290d3c5b15lb6.gif

[maridane]

I MISSED YOU, TOO, FRIEND!!!!

I know I seemed to have faded from the loop after our move to Florida (we're now back in NC after 2 years) I did try to read when I could, but life got a little busy for me. I went to work, spent some "catching up" time with my Florida Family, had some health issues of my own to deal with, spent a lot of time with my brother who went into rehab for his drinking problem and then his recovery, and then there's always been..........Nikki, DH, my 3 boy's and grandaughter. Sadly, I haven't been able to see my 4 y/o grandson since before we moved to Florida. We don't even know where he is :(

Nikki's pregnancy has been anything but uneventful. It is by God's Grace she's made it this far. Poor girl she's had the Hyperemesis and been on the Zofran the entire pregnancy. A shunt failure scare at 2 months, and another last week. If she doesn't go into labor on her own they are going to induce her next week. Her nsg wrote in his notes, "He expected Nikki's shunt to fail during the last month due to increased blood volume." She does have a great team of high risk ob doctor's at Duke. There is one assigned, but a total of 10 that watch her case weekly. They are also working closely with her nsg. She went into pre-term labor at 33 weeks and they had to give her meds to stop the labor which took us all for a scare with her heart. They also gave the baby steriods to develope her lungs. None of us (including the doctor's) thought she'd go this much longer (she's now 38 weeks 5 days) She's the cutest little Mommy-to-be! She lost 12 pounds early on and is now only 4 pounds above her pre-pregnancy weight. Baby appears to be doing well.

With doctor's never thinking Nikki would live or live without severe mental retardation, it's such a miracle that she will soon be a mommy herself. I remember wondering when she was a little girl if she'd ever be able to have children, none thought she would, and well........here we are! The day she was born doesn't seem that long ago.

How are you, my friend? I'm happy that Tonya is doing better than before, but only wish for pain free days. Praying her disability is approved.

http://i38.photobucket.com/albums/e101/bettysue66/blinkies/BearHugs21114.gif

Nina

http://snugglepie.com/cb/132687.png

http://img256.**********.us/img256/2910/428da27a51d0743f0db4fc27766c88290d3c5b15lb6.gif

My friend. I knew that poor Nikki was having all kinds of problems and I guess that is to be expected. I think that she must be under the care of some very good physicians. I am so sorry that you have been having problems yourself, and that you have not been able to see your other grandchild. It is so unfair, so unfair. Such a shame that children become a weapon and a tool to use against other people, that is so NOT RIGHT....... Honey you and Nikki are always in my prayers and please if you can, keep us up to date on how things are going with the both of you... God Bless you all, Marilyn

[Brandon's Mom]

Hehehe, I was going to start a new thread but I'm sure Nina won't mind me hooking up with you here Marilyn.;)

I stopped being active on this particular forum a long time ago (denial seems to be the only way I get by) but decided to check here tonight because I was thinking about you and wanted to see if you'd written an update since the boards came back up.

{{{{Marilyn}}}} It saddens me so to know that your daughter is still unable to return to work and is still suffering. I suspected you couldn't be doing well, since you haven't had your surgery yet, but my foolish optimism was hoping that maybe you were doing ok.

You mentioned Tonya can't find a neuro to see her in Salt Lake City and unfortunately, I have the same problem here in Phoenix. Oh, there are tons of adult neurologists but I got discouraged and gave up after seeing three of them. One of them treated me for 2+ years as a medication lab rat and he finally diagnosed me with atypical vestibular migraine disorder and told me he couldn't do anything for me (I wasn't very happy and I reminded him that he hadn't done anything for me for 2 years). The other two neuros talked down to me, with one even telling me that I'd feel better physically if I would just get my depression treated. The neurosurgeon that treats my twins is married to a woman with a Chiari so I asked him who he recommends and when I called that doc's office I was told he was not taking new patients and I had to see a partner (that was the jerk who told me to deal with my depression).

Who is Tonya seeing to manage her pain/headache issues if she doesn't have a neurologist?

Is there a chance that you will get to TCI to have your surgery in 2007? I keep trying to convince myself that I can hang on and wait to go to TCI to go through the testing and screening until my kids are all out of high school. My youngest is a sophomore, Britt graduated last year, and Brandon will leave HS whenever I decide to pull him out. While I don't have many good days, it doesn't seem as if my symptoms are progressing either.

You're in my thoughts and prayers dear.

[maridane]

Wow, is it ever great to hear from you! I have wondered about you so many times I can't even begin to count them. I can't believe that Britt has already graduated and Brandon; how is Brandon doing these days?

I thank you for the kind words and concern for Tonya, we had such high hopes and yet maintained a realistic approach as well. We knew there were other issues that could effect the outcome of her decompression, issues that really need to be addressed but when you can't get Dr.'s there to look or listen you feel as though you are fighting a losing battle. Tonya has cervical and lumbar spondylosis as well as an entrapped nerve root at L 5, same as me wouldn't you know.

The headaches are better until she does something, anything! If she gets on the computer at home it only takes about 10 minutes and wham here they come. Her work was on computers and so that eliminated her ability to go back to that. She is in the hearing stage on her disability and although she finally did get her hearing the medical guy for it who is like 80 years old and reading from 18th century textbooks had the audacity to say that everyone knows that unless you are herniated 12mm or more, chiari has no effect on you at all. She had to remind him that her herniation at the time of surgery was indeed 12 mm and that he was totally incorrect on his information so the judge says that he wants an IME even though her own pcp wrote a letter to the judge stating that in no way was she able to return to work, ever!

So much for giving the treating physician's opinion controlling weight. She had to go through a psych exam which took 4 days to complete and is now waiting on his opinion and of course SS has not sent her a doctor to see for an IME..... Her hearing was on the 14th of September. ..... Her doctor wrote another letter to the judge and we are hoping that it in combination with the psych eval will get her her disability so she will have insurance that will allow her to return to NY and TCI for further testing and eventual proceedures.

I know that you would love to be able to wait on getting something done about your chiari Joy, wouldn't we all? But you have to go by your symptoms, and it really is hard to find a doctor knowledgeable enough to be of any use anywhere. At TCI they give you this test and they base your score on it as to whether or not you are bad enough to have surgery offered. If symptoms are relatively mild and are not effecting your quality of daily life, then they won't do surgery. The test is called the Karnofsky test. I pray that your symptoms do not progress as I can tell you it is the most horrible thing I have ever had to face in my life. Childbirth was nothing compared to this!

I could go on and on but my time is up on here for now... I am being screamed at to get up out of this chair and away from this computer by my body and I have found that it is best to listen and obey... lol..... Will come back and write more as I am able.... God BLess you Joy, praying for you and the children....... All my love, Marilyn

[Brandon's Mom]

{{{Marilyn}}}

I've known for a long time now that TCI chooses their candidates for surgery primarily by the symptoms and how they affect daily living. The only way I can keep my symptoms under control enough to avoid being bed-ridden is to alleviate nearly any and all activity. I'm not living life, I'm just surviving and it's been years of this, as you know. That is why I'd expect the physicians at TCI to encourage me to have the surgery.

I've been homebound for weeks at a time and if I didn't have 3 kids at home I'm sure I wouldn't get out of bed most days. I haven't given up hope of feeling better someday, I just know that having the surgery now is just not an option I will consider. Fortunately for me, as long as I am very careful with my posture and use pillows to support my lumbar area and my neck I am able to sit at my computer, because it is often my only contact with other people. Sad and pathetic... well, yeah, but it's just the way it is and I'm sure YOU can understand and empathize as few others could.

While I feel bad that Tonya is having to fight the system in order to get disability, I'm not surprised. After many years of offering support and advocacy for individuals with special needs I've talked to an incredible number of families who've had to fight for SSI, disability payments for adults, etc. We got REALLY lucky when we went to get him on SSI once he turned 18, he had been off SSI for at least a couple of years (husband got too many pay raises) so we were told he'd have to start the qualification process all over. THANK GOD when I went back to the main social security office here we got a supervisor to meet with us who knew how to put the paperwork in to get him restarted with his old medical qualification. She saved us so much stress and work.

Brandon's doing ok. Our main problem is trying to find him services now that he is an adult. I thought the department for developmental disabilities children's division was bad because they would assign his case to new caseworkers every 2 years or so... well, he has been in the adult division for one year and had 3 caseworkers in the first 7 months and hasn't had one since the beginning of the summer! They claim they have nobody to take up their cases so we have no help from the state in getting him the PT and OT he needs. The school stopped his PT and his school OT seems to be concentrating all of her efforts on his use of the computer. He has literally fallen through the cracks of the "SYSTEM" and I am trying to get him the services he is qualified for. It's very hard to deal with this type of issue when I have grown to despise talking on the phone because of my hearing impairment. :rolleyes:

Thank you for the prayers my dear, they are greatly appreciated.