Looking for some Task Solutions.

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
gawilliams
Posts: 45
Joined: Sun Oct 31, 2010 12:47 am
Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.

Looking for some Task Solutions.

Post by gawilliams »

So Lauren is going to be turning 8 months on the 16th. I cant believe how fast time has passed. I look at her everyday and am just so thankful that she fought for her life to be with us today. Well as she is getting older, she is getting bigger, and with that said she is really getting mobile. She is rolling over to her stomach (and back on her back) towards her right side (shes a ROBPI) , but that is as far as she gets right now. She is really using those tummy muscles to try to help her sit up and those back muscles are in full force helping her to sit up on her own, with the exception to her falling to the right.

Well now i am trying to find some solutions to some things that we are ocurring now. Well first, how did your little one sleep through the night? I have to confess, I let her sleep with us because i am so scared she will roll over then roll back on her arm and lay on it all night or her rolling to the left side and the arm is just hanging behind her, verses her being in the bed with me at night and me just opening my eyes and shes right there for me to check on. How did you guys handle those situations or any other situations that came up with your little one? Also, my previous employer is wanting me to come back to work. I have been out of work since I was 4 months pregnant so now i am not feeling going back and someone keeping her. Especially with her arm, i wont send her to daycare fearing that they will not handle her (arm) the way it needs to be. What did you guys do for childcare? My husband says it is fine for me to stay home with her, but i think i better take this job And also, how difficult was it for you parents to bathe your little one (with a completely paralyzed arm). She is getting to big to lay on our bathroom counter and she doesn't quite have the back muscles to sit up completely.

And one last one (for now...lol) is my baby seems to be very clingy. Does he/she have to be stuck to you 24/7?
It seems like there were a few more things, but I guess I will do another post for them. Thanks in advance for any advice.
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Looking for some Task Solutions.

Post by jmar »

i had a nephew who had a severe disability. as far as taking care of him we were all taught everything that he needed done before we could babysit or take him out anywhere. my sis made sure we knew what to do in any scenario. don't worrry about grandparents, aunts, uncles, etc taking care of her. they can handle it. although he could not do anything for himself, he was disciplined just like any other child, he slept in his own bed, he was treated as fairly as his sister was. he got in BIG trouble when he pulled his sisters' hair and tried to trip her when she walked by. when he was in bed at night sometimes he had a strap around him with a smaller strap around his arm to hold his arm to the side. almost like when a person has shoulder surgery and the arm is strapped to the body.

i am talking from the "other" side of things. i am an aunt. i did fine with him, so did every one else. and yes, my sister called ever 5 minutes (it seemed) to check on him. but it is normal to worry about leaving your baby girl with anybody. but i assure you she will be fine.

one thing i learned from him is not to feel sorry for him (or anyone with a disability). he ABSOLUTELY HATED that. look at her as an 8 month old baby. not as an injured arm with a baby attached to it. i dont mean that in a negative way, but that happens sometimes and the person doesnt realize it.
hope that helps. good luck and you will be fine.
the most important thing you can do for her is to TAKE CARE OF YOURSELF
siobby
Posts: 28
Joined: Sat Mar 05, 2011 7:26 am
Injury Description, Date, extent, surgical intervention etc: My son was born 14/10/10 with shoulder dystocia as a consequence has brachial plexus palsy of the left side. He has no elbow flexion or supination. Exploratory surgery on 30/03/11 found significant neuroma's to C5 & C6. Nerve Grafts were required and we are now anxiously awaiting results.
Location: Brisbane

Re: Looking for some Task Solutions.

Post by siobby »

Hi, we bath our son in a very shallow bath, just a couple of inches of water in the bottom and he lies in it, he also enjoys showers with Mum and Dad. He sleeps in his own bed, but he is not quite rolling yet....almost, so please share if you find any solutions. Co-sleeping is not a problem if you and your partner are both ok with it, I must admit I have a bed in my sons room that I sleep half the night in with him, my husband does not like to share a bed with him in fear of rolling on him.

I wouldn't leave Jacob in daycare for the same fears as yours, but I would be happy to leave him with family members if I needed to. They swap and change staff to much at daycare for proper training to occur. My daughter goes one day a week, every week I tell them not to let her sit with her legs in a W shape, and every time I pick her up its a different member of staff and she is sat with the W.

Hope this helps
User avatar
F-Litz
Posts: 970
Joined: Fri May 26, 2006 6:53 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
Location: Ambler, PA

Re: Looking for some Task Solutions.

Post by F-Litz »

It all depends on the day care place... how many babies do they have - what's the ratio -- I mean you really have to look at the big picture. I had Maia in day care 3 mornings a week so that I could get some part time work done and it was fine - I gave them the rules and she napped in the morning anyway -- when I got there to pick her up, they had this one visiting grandmom and Maia was her baby --- I always found the two of them snuggled in a rocking chair and she would do range of motion for Maia's arm - she was experienced in doing it with her own son. don't give up on the idea - just find the best place with the best people who match up to your needs....

about sleeping --- I always gave maia a bath at night and slowed down the pace at around 6'ish.... nothing loud and blaring no bright lights --- I read in some book that it's important to keep nighttime, bedtime and day time energy time. So don't watch tv if they can't sleep - don't turn the lights on - don't feed them anything not good after a certain time, etc. So by stepping her down like this we seemed to have success. I also put a queen size futon on the floor for co-sleeping when necessary - but I would only stay until she was deeply asleep and then move on to my own room. I need to really stretch out when I sleep or I don't sleep.

Do you have a regular new mom group - maybe an online group ? When Maia was born they had this place called Parentsplace and moms who had children born on a particular month of a particular year would gather in those groups and talk about the baby thing -- we were really great help to each other -- they group is actually still together and all the kids are turning 13!! We did a lot of problem solving together.

best of luck with everything,
francine
User avatar
bfaithda
Posts: 88
Joined: Fri Jul 20, 2007 10:40 pm
Injury Description, Date, extent, surgical intervention etc: My name is Bridget, my son Brayden has a LOBPI. He was born 5-14-07 and weighted 11lbs 3ozs and was 22inches long and got stuck on my pelvis coming out. All 5 nerves were involved 2 ruptured and 3 avulsed, and also had Horner's Syndrome. He had primary surgery in St. Louis with Dr. Parks when he was 3 months old. He used synthetic materials to fuse the nerves together, because the nerves in his calves were not long enough. Brayden currently does aqua therapy, PT, OT and speech therapy. He has little movement in his arm and hand, but that does not stop him from having fun and being a normal boy!!!
Location: Owensboro, KY

Re: Looking for some Task Solutions.

Post by bfaithda »

My son had a brace that velcroed around his waist and his arm velcro to it, like a sling. He slept with me until he was about 8 months also. I had to put him in his own bed because I was 7 months pregnant. It took a couple of nights of listening to him cry, but he finally would just lay down and got to sleep. Once I turned on a little muscial box on that displayed lights on the ceiling, he would lay down and go to sleep.

As far as the daycare question, well I quit my job to take care of him. I am still a stay at home mom, and so happy I took this choice. But if you are wanting to go back to work I would defenitely do my research and visit place until you feel completetly comfortable. Find a palce that has lots of experiance in taking care of children with disabilities.

As far as the tub, Brayden was also late setting up by hisself. I was scared to put him in the tub. Finally I got him a seat for him to set in in the tub. Here is a link to Walmart that has one. I had to order one off line too.
http://www.walmart.com/ip/Dream-Baby-De ... t/13213087
Also they have these little tub that are great and fit inside of the tub. Plus inflatable so won't hurt if they slip.
http://www.walmart.com/ip/Munchkin-Whit ... ub/2403317

Hope this helps!
Bridget Brayden's mom
mamaofsix
Posts: 214
Joined: Sun May 11, 2008 5:20 pm
Injury Description, Date, extent, surgical intervention etc: Second son, Cameron, left obstetric brachial plexus injury in 2005.
Primary never graft surgery at 3 months old at St. Louis Children's Hospital
and several rounds of Botox injections.

Re: Looking for some Task Solutions.

Post by mamaofsix »

We co-slept until Cameron was almost a year. I was nursing, so it was pretty easy to have him in the bed with us, but I also had that same fear of him rolling over the wrong way, which he did a few times. When we moved him to his crib, I was so worried..I kept checking on him to make sure his arm was in the right position. I remember telling myself he was fine and looking towards the parents that had been where I was then. I kept thinking "They made it..so can I!" So..we did.

With baths, I put a small amount of water in the tub and held him with one arm on his non-affected side and washed him with the other after he was able to sit up by himself. Before he could stay sitting by himself, We used a baby bath in the tub.

I am a stay at home mom. I have family that I trained and trusted to watch him while he was younger, but there wasn't a daycare that I could trust. It wasn't just the teachers, but the other kids too...so fortunately I did have the option to stay at home. For those who do not have the option, maybe using a family member or even having someone to come to your house to watch your baby- or a small home daycare. The adult-child ratio has to be taken into consideration, like Francine mentioned. It is difficult to focus on the needs of a special needs child when there are several other babies to tend to.

Clingy is normal with all the attention our kids get early on. Just with you staying at home, it is natural for Lauren to be attached. You are who she is with all day! When Cameron was moved to his crib he cried for a couple of nights, and we just had to let him cry it out. It got better! Since Cameron was my second, it was not so hard for me to kick him out, even with his injury.

Hang in There!
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Looking for some Task Solutions.

Post by katep »

I stayed home for 6 months and then went back to work part time (20 hours a week) for a year. I had a nanny come in and take care of Joshua (my only at the time).

It was the worst mistake of my life.

I finally realized that it was a mistake just after Joshua had his first surgery, which wasn't until he was 13 months old. I realized that I was paying somebody else to watch someone else watch my little boy grow up, to recover from his surgery, to learn new things and meet new challenges. I realized that I had nearly lost him when he was born, and now I was giving him away for a big chunk of every day.

So I quit. I wish to GOD I had done it sooner. Joshua's attachment to me suffered in that year, and it didn't have to. A much larger percentage of my time spent with him was therapeutic (frustrating and painful) and that didn't help. You describe your baby as clingy... she probably is. She's been through an awful lot, and will probably continue to experience strange sensations and possibly even pain as she recovers from her surgery. I wouldn't have spoken out, except that it sounds like from your post that you do not want to leave her. Sometimes people have to take the better of evils, and my heart breaks for those who had to go back before they were ready. And for some people, working is better. I understand that. But it doesn't sound like you are one of those people, and so I beg you to consider...

Your daughter is young. This time is short. She's been through so much. I would tell your old employer that you have a better and much more important job now... and don't look back.

Kate
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Looking for some Task Solutions.

Post by katep »

Actually, overly clingy might look like good attachment, but sometimes it indicates attachment problems. We have two boys who were adopted out of orphanages, and unfortunately know a lot about attachment issues. The overly clingy velcro-baby is usually "anxiously attached" - he/she loves you and wants to be close but has a deep persistent fear that you will disappear or leave. That constant state of anxiety leads the child to cling. Our youngest was incredibly traumatized by being adopted at 22 months of age and was very anxiously attached for more than a year after we got home. Some people say such a child has to "learn" to let go, but others (myself included) say why force it if that child has already been through so much? We let our youngest be a velcro child for as long as he needed, with myself or my husband always with him, and now he's a well-attached normal four-year-old who is appropriately outgoing but also discerningly cautious with strangers.

Kate
bpiparent
Posts: 17
Joined: Mon Jan 24, 2011 2:59 pm
Injury Description, Date, extent, surgical intervention etc: Daughter born 5/10, avulsion, tearing and stretching, 1st surgery 9/10.

Re: Looking for some Task Solutions.

Post by bpiparent »

My daughter just turned 11 months old and her left arm is affected, at night I tuck her in tight leaving her arms free. The tightness of the blanket stops her from rolling in her sleep. Since the weather is getting warmer and a blanket may be too much I use a light sheet or receiving blanket to keep her on her back. I have been doing this since birth and she likes it, it seems to make her feel secure. She has been sitting up on her own since 8 months but bathing is still an issue. It all boils down to planning. I get everything ready first (within grasp) I put a small amount of water in the tub and put her head in the crook of my elbow while the rest of her body is laying down. While she is in this position I can wash her hair and body with my other hand, it is easy to turn her so I can get her bottom and when she is done I get a little wet but I put the towel on my chest (under my chin with one hand) and place her in the towel. As long as everything is near you this works, and my daughter is a big wiggle worm so if I can do this anyone can. Hope this helps.
gawilliams
Posts: 45
Joined: Sun Oct 31, 2010 12:47 am
Injury Description, Date, extent, surgical intervention etc: Daughter born 8/16/10 has OBPI in the right arm....First surgery(nerve graft) done at 5 months(performed by Dr. Kozin).... four avulsions, one rupture (at the spine)..... As of 4/9/11 still no movement in arm, wrist or hand. As June 2013, bicep, elbow, shoulder function active, flexing with gravity, still no wrist or hand/finger function.

Re: Looking for some Task Solutions.

Post by gawilliams »

:) ;) :) ;) Thanks everyone for your responses. :) ;) :) ;)

After this past week on a very needed vacation, and watching Lauren interract with family,I think i have made the decision that i am not ready to go back to wok. Between her therapy and her being so young and not having any control of her "righty" I would just feel more comfortable If I were at home with her. I really have no one to keep her (except for one person....and thats a little complicated) and i refuse to put her in daycare because of what one person said, staff change, to many children and just careless people. I do have the option to stay at home, my husband actually is encouraging me to, i think i just feel a little stressed from my previous employer, not in a bad way, but because they came to me first when the position re-opened instead of going somewhere else. I guess I just feel more guilty than anything. But my daughter is #1 , and her safety has to come first.

As far as her "clingy", i know its just from her being with me everyday, all day. It doesn't really bother me, just it seems like she cant go down for a nap/or bed time without me laying with her, she cries 85% of the time when i put her down.... so it just feels like i dont get anything done, nor any "me time", even if its for 15 mins.

As far as bath time, i found a good solution. I got one of those clear storage bins that is about three to four inches high and placed one of those bath mats in it for slipping and now that she is getting better in her sitting this seems to work well. But like one person said, having everything ready beforehand is a must.
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