My special boy, Orion

Amanda - posted on 06/11/2010 ( 6 moms have responded )

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My son contracted Group B Strep when he was born, but never found out till he was 3 months old. Orion stopped eating and we ended up having to take him to Urgent Care. The dr there told us he had trash and acid reflux and told us to take him to the hospital so he wouldnt dehydrate over the weekend. We get to the hospital and the nurses started the admitting process. As soon as the dr came in, he said Orion has meningitis and to take him to the intensive care unit right away. After hours and hours of waiting and tests, we found out Orion also had hydrocephalus. The hydrocephalus caused a stroke (which made his eyes click to the right) and seizures. After a long month at the hospital, Orion came home with a VP shunt and a G-tube for feeding. He hasnt been the same since... In March, a specialist told us that he has Cerebral Palsy. Later that month, Orion got RSV. His breathing didnt sound right even when he came home after that 2 week hospital visit. We ended up having to take him in again because he still wasnt breathing right. The specialist tried taking out his adenoids to help him breathe through his nose, but it didnt help much. The only resort at that point was to put in a trach... I have to admit, it HAS solved his breathing problems.

My son has been through a lot in his short life; he will be 1 in July. So we just hope and pray for things to go okay, but it gets a little depressing at times. So here I am trying to get a little support and tips from mothers who have been through similar things...

Mother to a new trach baby

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Maren - posted on 11/07/2010

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Amanda,
I was just at a conference for Palliative Care and a woman spoke concerning her older brother who had many issues in life. She shared that even though she was the younger sibling, she passed her brother over in intellect. There were many other things that went on as normal- sibling issues,love for each other, teaching each other things, moments that siblings share, etc. She and her brother continued to be siblings in the same sense. Your younger child might pass Orion one day in all the "typical" development BUT Orion will still be their sibling. My daughter, who is 6, has done wonders in taking care of our son. There is no way for her not to notice the vent tubes, his feeding tube, his medication schedule and the nurses that come but even with all that she still comes to him to play, bother, kiss, read to, and all the good things big sisters do.
I am a special education teacher who always took the time to spend enough time with parents to share all the strengths their child exhibits. I would talk with parents about not worrying over what their child could not do but focus on what they were doing. Now with my son I too am reminded to not worry about what he's not doing in the line of typical development but to rejoice when Owen swallows, or coughs, or holds his head up for 5 seconds. Treasure moments that we might of taken for granted (rocking him to sleep, having his head next to my shoulder, etc).
Life with a special needs child is hard but so is life with a typical developing child. I say it's just a new challenge that I have been given and I walk this path that I've been given. When I post on facebook that I have cried over something (last one was when I took my daughter by herself to a Halloween party and I say a dad there with his young child. I wanted my husband and son (who were at home) with us so we could be a family and do family things) friends remind me that crying is OK. We have to! We do and then we are fine. I love being comforted in knowing that I am not alone on this journey and that others are there to support me. Circle of Moms has been a real help! I hope Orion's first birthday was fun and that he is doing well. -Maren

Joanna (Asia) - posted on 06/16/2010

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Oh dear...I can only imagine how concerned you must have been about his fever...How is he now?
Amanda, I guess nobody knows what the future will be like for any of our precious children and it is scary not knowing, since we humans like to have control over things and circumstances:) But I take it as a lesson of ability to live in "NOW" and really appreciate itas it is NOW. Orion will be showing you what he can or cannot do and what he will be able to understand about himself. He might recognize that he is different when he is older, but then again he may not. And I personally strongly believe that if we, moms and dads, show our children that it doesn't bother us and they feel loved and accepted the way they are, he will be the happiest child...it is up to us NOT TO compare them to other children, because in the end every one of us is unique and different:)Our children will just need more help with some things .And for your new baby Orion will always be as he shoud be, his or hers older brother...
And about the word "normal"- I don't like using it anymore, because my Monika is showing me that it means only what we expect of others in our own categories, and not the real ones.
And Congratulations on your new Baby, I think it is soooo good for all of you to have your family expanded...TTYS, xoxo.

Amanda - posted on 06/16/2010

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Thank you all so much.
My son was only home for a week when he hit a fever of 106.5!!! I was so scared!!! Turns out, he has a staph infection and had it when they sent him home from the hospital!!!!!!!
I can support my son through everything he does. I know his developmental skills are WAY slow, and I have no worries about that. He will learn at his own pace.
Now I'm 3 months pregnant again and in some ways I think that this baby will help Orion learn his milestones, but I cant help but think "what if Orion CANT learn them??? and this baby will completely pass Orion his whole life...??? How can we convince Orion that he's normal when his sibling is doing so much more? My son has had SEVERE brain damage and nobody can tell if he will get better...

Heather - posted on 06/15/2010

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my doughter has had her trach since she was 5 months and is almost 4 now. you will be suprised about how well these chidren adapt to the trach. my daughter can talk just fine and is smart as a whip she says her abc's counts to 20 in english and10 in laotian and can speak a little bit of laotian which is her grandfathers native language just keep your head up and enjoy everything about your child there kids are so much stronger than we give them credit for hope all is going well

Joanna (Asia) - posted on 06/13/2010

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Dear Amanda,
Your little boy went through a lot his first year, but guess who will remember this and who won't? You are his mommy and you are worried and thinking what else is there ahead of him, but Orion does not worry about future, he doesn't waste his energy on "what will be" thinking. The babies live in "NOW" and that is so good because they deal with one thing at a time ...this is what I learned from my little trach girl. Try to make his life as "normal" as possible filled with lots of laughter and loving and cuddling, and you'll see that his differences will become part of him, and for him it is going to be just "normal". As for your community, it may be a little challenge for you, but I am sure with time you will become so comfortable with everything , like it's going to be your second nature, that you'll be an inspiration to others...and who knows, there might be other children going to be born with similar needs and you will be a support to their moms:) Take care and welcome to this community. Joanna.

Catherine - posted on 06/13/2010

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Amanda,
I don't know for sure what to say. Orion has so much more going on than my son Hunter. I will pray for your family.
The only advice I can give is what I am still working on myself. Don't look at what Orion "should be doing" or what other children are doing. Enjoy his personality and celebrate every little victory. For example, my son is 2 and just learned to crawl. We got excited like he had won the national spelling bee.
And don't forget to take care of yourself. You really need it!
Catherine

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