Does anyone else have a chronically ill child? My son is almost 20 months and has been dealing with health issues since he was born. He started out just not having an adequate suck. This put him in the NICU as he was dropping weight. He was back in the hospital at 5 weeks with FTT. He spent a week there. He went back in a week later for RSV/Pneumonia and FTT. During that time we thought he had reflux but they decided against a procedure called a Fundoplication.
Flash forward to now. We have been told that he has Probable Dysphasia, Oral/Verbal Apraxia, and possible Aphasia. Today he had a dysphagiagram and the news was not good at all. He has completa aphasia and is basically nonverbal. He needs to have ST, PT, and OT. He goes in next week for a hearing test. He has extreme reflux and now they are again talking about the Fundoplication.
Then you add that I have 3 other kids... 2 of which are preschoolers. Is anyone else going through the ups and downs of chronic illness? Any tips you would like to share for a mother who feels like she is sinking!!LOL
I know just where you are coming from. My 10yo son was born with ear infections, asthma, ADD and Asperger's Syndrome (a form of Autism). I know the inside of our children's hospital better then some of the nurses.
My 7yo daughter had 3 years of upper respitory infections. (equals more trips to the hospital).
My 6yo was born with a mal-rotated bowel that we didn't know about till she almost died. She had surgery at 2 months of age. She was admitted to the hospital and I slept there for 3 weeks, during the worst snowstorm in Calgary history, so I was stuck there for over 2 weeks - I couldn't get new clothes, deoderant, anything. She also has language difficulties. No one could understand anything she said till she was 5. Now we're trying to teach her the alphabet and that just isn't catching on! lol She can't sort out sounds for the life of her.
So, after all that, lol, I know how you feel. It is hard to have a kid that is sick all the time. This year we've pulled our kids out of public school and started to homeschool. The respritory infections are gone, the colds and flus are gone. Life has been much easier on everyone. Their asthma has improved significantly.
I make sure I take time for myself. Whether it's just watching TV in the bedroom with the door shut, taking a bubble bath, etc. If you aren't feeling refreshed and strong it's so much harder to deal with sick kids.
Last edited by PinkPiglet; 03-03-2004 at 08:53 AM.
I wouldn't wish it on anyone but it is great to know that I am not alone. You are right, when you are dealing with the children and they are sick to boot, it can exhaust you. I love to just sit and soak in the bath as that is the only time that I get alone. I try not to think about all of the tests and trials that we are going through right now.
I think the biggest thing that I think about with his language delay is the future. I know children can be so cruel as can adults. It kills me to think that someone would ever be mean to him so I try to think of how he will be once he starts school and such. I guess we will just have to do the best we can and focus on right now.
Thanks again and good luck to your little one learning her ABC's.... How cute
Hopefully your son's language skills will kick in suddenly as my daughter's did. I know what you mean about the future though. I wonder how my child will do if she can't read anything. It's hard. I try not to think that far ahead too often though as it's too depressing. I just pray something will happen between now and then to make it a non-issue.
About your son, has he learned any sign language. He may be non-verbal but I'll bet he could learn sign language and 'talk' that way. Many others have done that.
I have heard that when children have problems with language skills, they usually have problems reading and writing. Have you heard this? I agree that thinking into the future is kind of like borrowing trouble.
He knows a few signs but doesn't make them himself. He does do the sign for "More" and that alone has cut down on his frustration. Thanks for the reassurance
my brother had speach problems as a child and i had to translate everything he said to people (even to our parents) and he did have a really hard time in elementary school reading and writing, and even now it is a little hard for him as a highschooler he had problems taking tests because he couldnt read the questions well therefore he didnt comprehend them well and gave wrong answers. but now he is making pretty good grades and his speach is just as good as the next persons.
i just wanted to tell my story, and let you all know that sometimes it isnt as bad as it seems!
Hello, I am also a mother of 4....3 girls ages, 17, 13, and 9, and a precious little boy that is 6. My 6 year old son has neurofibromatosis and we too unfortunately spend so much time in hospitals and clinics. We have to travel 4 to 6 hours to see some of Dylans doctors. Our son is chronically ill, he's been on 2 clinical trials already to help stop growth of benign tumors but so far nothing is working. His little body is deformed from the tumors and for the most part he gets around in a wheelchair.
What I find difficult is finding enough time to spend with each child. I feel my other kids feel left out because of all the time that I am forced to spend with Dylan. He too also has speech, OT, and PT....he see's doctors on almost a weekly basis.
And now to make matters worse we took on 2 foster children...ages 8 and 20 months. I am really starting to regret that decision, but feel too guilty at this point to let them go....but emotionally it's been very tough!!
I do almost all the running around with the kids because of my husbands hours at work...and when he is home, it seems like he's always sleeping. So he doesn't quite understand how much I have to deal with. He doesn't think it's bad at all because he only see's the kids for like 2 hours each day.
Anyway, enough of my rambling...but I certainly do understand what your going through.
I've been following this thread, but I've been rather hesitant to post, because I'm not the parent of a chronically ill child. I am, however, a sister to my little brother who has Downs Syndrome and was considered chronically ill with renal failure up until a couple of years ago, when he recieved a transplant.
Sweetums, I wanted to respond especially to your post about how your other children feel left out. There were times, were I felt like I was being ignored or left out. I have to admit, those feelings, for me, were most apparent when I was very young, and my brother was, well, new.
They will get over it, the feelings of being excluded. Speaking only from my experience, I bet that they don't even feel very excluded, or upset about it. Many times, I believe my mother felt like she was picking up from me that I was feeling left out, and maybe I was a little. But I understood, I could do all those things for myself, feed, eat, bathe myself, of course, my brother couldn't.
Besides my brother with DS, I have two other brothers younger than him, and I've spent a fair time just observing them, and I can honestly say that they don't resent the attention. They know why it has to be this way, and why. It's not fair, and it really sucks, but that's the way that things are.
We, speaking for my brothers also, know that my mother loved us all very very much, as a group and definately as individuals. And once we got past all the adjustments that having a sick child can cause, we worked really well all together.
So, I feel like I'm rambling here, but I'm sure that your kids are doing okay. You've got awhole lot on your plate, and it can't be easy. But you do what you do for your kids, and I'm positive that at least one of them will come to you some day and say that they really admired your strength and grace under a hard situation.
That said, I feel like I have to go call my mom and tell her again.
Thank you Siobhan for those words. Sometimes as parents we do feel guilty about our other kids. Thank you for letting us know that our kids will survive it all! It is, at times, hard to see the long term picture.
Please don't be hesitant to post as any experience with a special needs child is one that I would love to hear. I am starting to have problems with the other kids. My 3 and 4 year old have started telling people when they ask Garrett a question "Oh don't talk to him because he can't talk back" They also say "This is my little brother Garrett, he can't talk"
My oldest has made comments about how I don't have time for her anymore since I am always dealing with Garrett. I truly hope that they come to understand. I am so sad about what all of this is doing to my family right now. Since we are going through diagnosis, there are a lot of appts and tests to take him to. I keep telling them that it will calm down soon.
I think I am going to start having DH take care of the boys one evening a week or something and take the girls to McDonalds or something. I also think I am going to start having the little one's take a nap around the time the oldest gets home from school. Hopefully, that will help with some of this
That would probably help a lot. Sometimes we have to just make time where there is none! lol I try - don't always manage- but try to take a different child out Saturday mornings all by themselves while dh looks after the others.