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Wednesday, December 29, 2010

Prayers for Mitchell

This all started when he decided that he was done nursing, so about 3 weeks ago. Mitchell began to have constant diarrhea but I chalked it up to teething. A couple of days ago he started running a low grade fever and yesterday I found him pulling on his ear so I decided it was time to take him to the Pediatrician to see if something was going on. When we were called back the nurse had me weigh him and he weighed 14lbs 12 oz, when we were there for his one year check up in Oct. he weighed 16lbs 9 oz. He had lost almost 2 lbs in 3 months! I started crying because I felt horrible and I couldn't believe that I hadn't noticed he was loosing weight. He has been eating like a horse and should have been gaining, not loosing!! When our Pediatrician came she asked about his fever and how long he'd had it for, then we moved on to the diarrhea and I told her that it had gone on for 3 weeks. (When I say that now it sounds like so long and I can't believe that I didn't take him sooner but he didn't seem unhappy and there wasn't anything else that went with it so I chalked it up to teething.) We discussed possible diagnosis and she thinks at this point it is one of three, Celiac's, a hyper-thyroid or an intolerance to lactose. I am alright with any of those three, I don't know what I am going to do if it isn't one of those. That is what scares me the most, the idea that it may not be one of those, that it is something big and bad and ugly. I keep doing the woulda, shoulda, coulda thing over in my mind, beating myself up!! We have cut out Gluten and lactose as of today and hopefully we will see results and he will begin to gain weight. I am just asking for your positive thoughts and prayers for our little Mitchie Guy as we try to figure out his weightloss and what to do about it. On the upside, his fever was due to an earinfection and he is on antibiotics and they are already helping him to feel better.
Katie

Sunday, December 26, 2010

Normal

I found this on another blog I frequent.

Warning: this article is intended to make a serious point in an interesting way. It is not meant to offend anyone, except possibly doctors.

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I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrasment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.

Termination is an option.

Shall I book an appointment?


...from a parent who received a diagnosis rather like this.

Tuesday, December 21, 2010

Merry Christmas!!

I can't believe that Mitchell will be celebrating his second Christmas this year! It doesn't seem possible that he is almost 15 months old, the time sure does fly! Mitchell is doing so many things this Christmas that I didn't think he would be doing for a while. He is crawling and pulling himself up to stand, he is playing with his toys, he is tormenting the dog and his brother and sister. I love watching him get into trouble because one year ago I didn't think he would be getting in trouble, I didn't know what he'd be doing but I never thought he would be crawling and I certainly didn't think he'd be mischievous!! That's the thing about DS, they prepare you for the worst when you leave the hospital but they certainly don't prepare you for what's coming! If I would've been told how much joy he'd bring our family maybe some of my heartache wouldn't have come. I still have my bad days but they are few and far between. I think I will always worry more about Mitchell but I'm alright with that.
A couple of weekends ago, we were able to meet up with another DS family. Cylus is 14 and he was a lot of fun. His parents were wonderful to visit with and they answered a lot of questions and told us a lot about Cylus and his development. At one point in our conversation, Cylus's dad, Dave, said that Cylus is more like their other children than unlike them. While we were with him he played video games with the other kids, ate pizza, told stories about the dance he had just attended and got mad at his parents! We really enjoyed our visit with the Medina family and I look forward to future visits.
I haven't posted pics of Mitchell for a really long time so here they are!!

Thursday, December 9, 2010

We are going to the National Downs Syndrome Conference!!

Mike and I have been discussing whether or not we should go to the conference this coming year. We had decided that it might not be practicle though as we have a quite a few things planned. I went ahead and asked Maryanne, who is from our Regional center while she was at the house today if there was funding for families who want to go to different trainings/conferences and told her about the DS conference in San Antonio this coming summer. She told me that she would see what she could find out about state funding through various programs and when she called me back she informed me that she found enough money to cover travel expenses!! I am so excited I want to scream WOOHOO!!!

Wednesday, December 8, 2010

One day at a time

In the past few days I have spent alot of time being scared for Mitchell, or so I thought. Really, I am scared for myself. It's not Mitchell at all. He is doing wonderfully, he's pulling himself up to standing, crawling like crazy and getting into so much trouble. I am scared for me, what my life is going to be like, I know that sounds so selfish but just hear me out.... I want to know what I can expect of him, I don't want to expect to much of Mitchell and be disappointed but I don't want to expect him to do nothing because that is what I would get. Right now I feel like I can expect "Normal" things out of him, he is a normal kid but as he grows up I don't know what I can expect. I want to keep expecting normal things but I don't know if I dare. I want to know if my life is going to be about taking care of Mitchell or if someday he'll take care of me. I know that Mitchell is always going to need me more than my other kids but how much more? I know that he'll bless our lives and everyday I am thankful that I was chosen to be his mother. I guess I just need to learn to take it one day at a time because when I look to far ahead I make myself crazy!

Tuesday, December 7, 2010

In a funk!!

I have had such a heavy heart lately. I don't know if it's just that time of the year when life is so chaotic or if it is because I have been really reflecting on the past year. I have really been struggling with Mitchell and everything that goes along with Down's Syndrome. I just wish I could wake up and he would somehow just be free of Down's Syndrome but if that happened he wouldn't be Mitchell. I just want to have peace in my heart about everything. I want everything to be better and not so scary. I tell people all the time that I wish I had a magic orb to look into, to see what Mitchell's future holds. Will he have a job? Will he live on his own? Will he marry? I just want to know so that I can prepare myself, good or bad. I love him as I do all of my children but I don't worry about my other children like I worry about Mitchell. I want to know that I am doing right by him, I want proof that I am doing the right things... Is that too much to ask? Everytime I reach this point I turn to all of my blogger friends for help, prayers and inspiration. You all are amazing and really do help me to find strength just when I need it most.
Thank you,
Katie