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A rough night ahead


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Well I got Jayla back from her mom today with a raging 102.6 fever , a cough and glassy eyes. Jayla has epilepsy and takes a liquid med called Keppra 2x daily. If it gets past 103 it can cause her to have febrile seizures. We are dangerously close. I have managed at this point to get her down to 101.1. I started marking the bottle to keep track of whether or not she had meds. Well there is evidence that she had it at least once because the bag I keep it in with the dropper was all sticky inside because she can't managed to rinse the dropper off before putting it back in the bag. There was a lot more medicine in the bottle than there should have been though. The weekend before last she (Christy) did not give Jayla the meds at all. Then on Monday and Tuesday she was having staring spells (abscence seizures). It takes a while to level her back out. I ripped into Christy and O'Brien (Jayla's dad ) about this and the next weekend was fine. Now again no meds given. Christy said that sometimes she forgets. I think I will FORGET to drop her off next weekend.

This will be a very sleepless night as Jayla is very uncomfortable and whiny. It also makes me uncomfortable because of Tom's compromised immune system. I hope she does not make him sick.

Time for a new game plan.

Sorry. I needed to vent.

Denise

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Denise, how awful! Makes me want to go over there and smack that woman upside her pointy little head!

I know exactly what you are talking about with the absence seizures. That is what I saw with Larry. It's very frightening.

I'm praying that you will get a handle on this situation real soon. And prayers for health for Jayla and Tom, too.

Lynn

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Thanks everyone.

I have had the parental responsibility talk numerous times and nothing sinks in. And this is the one having another baby in September.

As they say any fool can have a child but that does not make you a parent.

Christy only seems to be involved in the fun and games part of parenting. What happened to the taking responsibility for your actions in having bought the child into the world. Especially a special needs child like Jayla.

I can't get the fever to break but have managed to get the fever down to 99.5. The poor baby is losing her voice. I got her to drink a half cup of juice and though she was not interested in breakfast she did eat some mac & cheese for lunch and is napping again. I think it hurts to swallow so she does not want to open her mouth. I worry about her because she is so tiny at 24 lbs. She is on doctor ordered Pediasure 2x daily which she gets through the W.I.C. program with a prescription from the pediatrician.

They have her listed as failure to thrive and the pediasure has helped her to at least maintain her weight. When she gets sick and won't eat it breaks my heart because it is such a struggle to keep weight on her.

Christy has caused me a great deal of stress over the years. She spent all but 3 years in special ed classes. She got in trouble with the law many times for theft and the last time added theft and battery together. I put her voluntarily into a residential treatment program and she spent several times in an inpatient psychiatric facility for self mutilation and depression.

Through all this I did managed to get her to graduate H.S. Then 3 months later ended up pregnant with Jayla.Christy has also tested as being 4 years behind her peers mentally. She is more 17 in her mind and actions than 21. Now she has another one coming. TOO MUCH STRESS!!!!

I wonder sometime how I have not managed to off myself with everything that has happened in my life. I guess I have to much of a sense of responsibilty to take care of my family unlike some of my family memers.

I think in Christy's case it has skipped a generation.

I could vent forever.

Denise

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Oh, Denise. I just wish I could be there with you right now and give you a hug so gigantic that you wouldn't be able to breathe!!!!!!!!!!!!!

When you mentioned having custody of Jayla the other day, I wondered.

I wonder no more. Instead, I guarantee you I would FORGET EVERY WEEKEND FROM NOW ON that Jayla's mother has any rights at all (other than to that proverbial slap up the side of her head!@!@!@!)

Can't you tell Social Services and get the weekend visits stopped? I know you need the break, but not at the risk of Jayla's life.

Carole

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Carole,

I don't have legal custody but I am putting together my case. I kicked Christy out the day before Tom started Chemo round 1 in Feb. Christy took Jayla with her. She spent 4 months going from homeless shelter to shelter. The first week she had Jayla with her and someone had put her up in a hotel for a couple of days. Under Tom's insistence I got Christy to agree to let me keep Jayla. Now that Christy has her own apartment through the subsidized housing here in Palatine she thought I was just going to pack up Jayla's thing's and drop her off. WRONG!!!! I told her she can transition back in. It has only been a month and a half and it is not going well. Christy does not work and O'Brien just works through the daily pay whenever he decides he needs some money. He won't go get a regular job because there is a child support order in effect and does not want them to take HIS money. I have financially supported Jayla from birth with no help from him or his family.

The saving grace through this with Jayla having Epilepsy is that she does receive a medical card from the state and she also gets the pediasure through the state. If she didn't have that I would not be in a position to keep her and she would suffer.

I am keeping track of all that is going on and will plead my case with the courts.

God help the next child because I can't.

Denise

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Denise,

You have your hands full!

May I suggest you contact your local social services office to get parenting classes for Christy? Jayla has a life-threatening condition called epilepsy. People can die from seizures. If you need help getting in touch with local social service folks, let me know. I can try to help from my end.

Kristi

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Thanks Kristi.

I have a plethora of number on hand to call for various services. There was a lady that used to come every week from when Jayla was about a month old for a little over a year. The local hospital set her up with a place called Healthy Families which is supposed to help young mothers with their parenting skills. She was given homework and charts to fill out. Christy never took it seriously. She took the attitude of "This is my child and I will do whatever I want and no one can tell me how to raise my child".

I think I will call Esther today and let her know the new turn of events. Maybe with the threat of never seeing her daughter again may make her take it seriously now.

Denise

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Denise, I have been absent but just read all you are going through, I hope you can somehow stay strong enough to do what is best for Tom and for Jayla and that the numbers and people you can call will help you! I will keep you in my positive thoughts, Jayla and Tom are very fortunate to have you there and fighting for them!

Deb

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YEAH!!! The fever finally broke and she is acting more like herself. She ate a big dinner and is drinking which she would not do earlier. We are now sitting here together typing this as we learn new faces.

She now knows Randy and Ned & Rosie by site. :)

Denise

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Denise,

Things always seem to happen at the same time...I have been challenged that way, too. In my case, I took on my 13 year old niece right about the time Charlie was diagnosed. It was a mess. Her name had been changed on her birth certificate, but not her social security and I had no power of attorney. Finally, went to court and got custody right in the middle of Charlie's initial chemo and radiation treatments. Had to get her in counseling and start a major retraining process. Somehow, we survived and she graduated from high school in May with a 3.3 GPA. Amazing given where we started 4 years ago. Your efforts will be worthwhile! Hang in there. Praying for all of you. Take care.

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Well Jayla had a little set back. Her cough got worse and she had so much mucus and phlegm coming so fast she was choking on it. I called the doc and she is now on Amoxicillin and Albuterol for the cough. She is a mess but she is also a fighter.

And now her Damma is sick too. I go to the doc tomorrow at 10:30 a.m..

I have the cough and sore throat. Heck, even the left side of my tongue and the roof of my mouth hurts. I am also having a hard time swallowing.

God help Tom.

Denise

Caretaker Extrordinaire

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