Monday, October 1, 2012

Our Days

I'll have to admit after reading another blog of a special needs mom. I had the gumption to share with many others how our days are here at the Reed Family household. I'll admit I'm a little scared to break it down because some of it would make me proud and happy,, like those days when I'm super mom and can do more than the average family without a child with special needs, and some of it would make me down right sad.  Like the lack of human contact from people, surgeries , medical procedures, a marriage that's been for 17 years but hurts and is a work in progress.  With that said though, I'm going to break it down. It may even make me see where I'm doing a little to much too, and it may show those out there that if I can do this and have a child with complex medical needs, well, so can you.
So bear with me here. If you make it to the end you are a super mom too, or this just may exhaust you too.

I'll go ahead and start with Sunday since its the first day of the week.

Sunday we get up at 7:30 am to get ready for church. Mass doesn't start until 11am but there is plenty to do before it even starts. I get the girls up , encourage them to each have breakfast. Which is an actual chore to do since they hate eating in the morning. I'm not sure why , but they just aren't breakfast eaters. So I'm rushing along calling out names asking if they have had something in their stomachs. The worst offender?? Maggie. She thinks she can live off of Poptarts and gets mad when they are gone and not in the house. Even if they are I try hiding them most days because Poptart is NOT a food group.   After nagging everyone to eat, then I have the fun of getting everyone to get dressed. Most days I have them pick out what they are going to wear for church , but some days I forget , or most times they don't do it when I ask them to.
 To get Maggie dress this requires unhooking her from her drainage bag, capping her, getting her dressed and then hooking her up to a leg bag because I won't have time to take her to the bathroom while teaching Religious Ed class. Even if I instituted help , I wouldn't want Maggie distracting the other kids because if one 5 or 6 yr old has to go to the bathroom, so will the rest of the class, and I only do one bathroom break ( because its all we really need.)

 Once I've gotten this all accomplished I can manage myself into the shower, dry my hair , get my clothes on and grab Maggie's book bag that we carry all her medical supply stuff in  to teach a kindergarden/1st grade Religious Education class before Mass starts. We are out the door 5 minutes to 9  (thank goodness we live so close to the church) and I'm over at the school building at 9 am setting up my class.  Then at 9:15 I gather up the kids and teach my 8 students all about God and the Catholic faith in a way only k and 1st graders would understand. Not an easy undertaking for sure since we don't have much of a curriculum to work with except the workbooks they order for the kids. So I have the joy of putting together something that is going to get us from 9:15 to 10:45 am without me going  nuts.
After that is all finished I have to gather up my things , take them out the van and walk over to Mass that starts at 11 am.  Thankfully I can sit in the pew and breath a sigh of relief that we had another successful Religious Ed class and now I can stop and meditate and pray and focus on God for an hour.
After Mass is over , we sometimes take a ride in the van just for a Sunday ride, or sometimes go over to the grandparent's house, or we just go home and relax.  After we get home and relax a while before I know it its dinner time. It goes by fast because I catherize Maggie every 2 hours right now because of her noncompliant bladder.
After dinner, The two older girls go to their Religious Ed class since its in the evening.
 So its bath time, and for Maggie I have to sponge bathe her since she still has her supra pubic tube in. Sometimes I will let her jump in the shower, but I don't make to much of a habit out of since I really don't have the green light to do it from her doctor.  After bath, getting everyone in jammies and hair dried its time for Maggie's enema. We do her enemas through her Malone now so that makes it a little easier. But I still need to make her enema recipe , heat it up to body temp, and then get her hooked up for her enema. That is ran for 20 minutes and she sits another 45 afterwards. While I'm waiting for her to get done with that I give Maggie her medication , Ditropan for her bladder , and her prophlyactic that she's on to help keep away UTI's (evidently).   During that time I am sending the other girls off to bed.  Once Maggie's 45 minutes is over, then its time to to her gentemyicin flush for her Mitrofanoff that she has. This is to help keep her from getting UTI's. Whether that really helps , well that's subjective. That sits in her bladder for 30 minutes , and then I uncap her and hook her to drainage bag since she's already sleeping in bed.
After that's all said and done I am grading any papers or work that the girls did during last week that I didn't get to on Friday or Saturday and setting up their new calendars for the week so they know what their work is. By this time its about almost midnight. Sometimes I will jump into bed at night and read a book , or I'll  piddle on facebook and check up on families we know.

Well, if your not tired yet ,here's Monday:

Everyone is up at 8 am , and the fun begins in making sure the kids have had their breakfast. Once we can accomplish this the girls grab their weekly schedules and get to work. They do their corrections or most times everyone is coming at me at once because they didn't understand something they just read, or something they made a mistake on Friday,.
Once we can get past that , I can work a little bit with Maggie and her work since she needs all my time to teach because she is so young.
This is where the first cathing for the day comes about. We also do her first flush for the day to make sure we get the "belly buggars" that everyone affectionately calls them ( its mucus accumulation from her neoappendix for her Mitrofanoff), out so that it doesn't clog her catheters later on.
Then its more, " Mom, can you help me? " Mom I have a spelling test, " Mom I need to take a test in X, Y or Z subject."  Or me getting on my oldest to quit daydreaming.
After that is all said and done  , its time for the next cathing and is Noon and time to make lunch. The girls set aside their books, have their lunch, and take a break until about 12:30 or 1. Depends on when I actually get to manage to eat lunch. Some days I don't.
Once break is done , then the girls get back to work , I get back to work with Maggie and we're done before 2pm. Somedays we get done earlier than this but it just depends because the start and stopping when I have to cath can sometimes bring everyone into a stupor and the kids can lose their focus.
When the girls are done its right about time they are getting ready for their afterschool activities. They are either at cheerleader practice, band practice , karate, or whatever activity they are doing.
In between this its another cathing time.
While they are gone I can get dinner started and once their back we have dinner and its time for dishes and getting them to help.
Getting ready for bed, getting Maggie ready for her enema, then her gentamyicin flush, medications , pj's and to bed.
After all that is done I am preparing for another Religious Ed class for Sunday. It really takes me all week to think about what I want to do with these little kids.  Correcting worksheets, writing papers, workbooks and preparing the next day's schedule for the girls.  By this time its about midnight, and I'll climb into bed and read a book until I can fall asleep.

Tuesday is usually a repeat of Monday , usually added in with sitting up and putting together ideas for Girl Scouts,  or religious Ed. If we are doing crafts I'm usually sitting up putting something together to make sure that what we're doing is going to work for a group of girls, or 8 girls and boys in my RE class, to make sure to troubleshoot anything that may be a problem if I did a project and if its going to fit in our time schedule. I know tomorrow I have to make a bake sale item ( which will be cake pops) for the girls Rec Cheerleading Fundraiser tomorrow. Not to mention correcting papers, workbooks, or prepare things for lapbooking or notebooking activities that we maybe working on too.

Wed is pretty much the same as Monday and Tuesday

Thursday is the same  as Monday, Tuesday, and Wednesday, but with the fact I also go over to the school to help out with the Kids Club. Thankfully I don't have to prepare anything for it. I'm just there to help since Maggie is there anyways and I'd need to stay. I"m good for helping passing out papers, helping the teacher with any last minute things she may need, and handing out snacks.
After I get home from that I spend my evening typing out my lesson plans and emailing them in to the DRE, and working on any things I may need.  Not to mention working on the kids' school work schedules for the day.

Friday is pretty much the same. with the fact I can relax a little more in the evening because there is no need to have to schedule classwork for the next day. I'm usually though still working on some kind of activity in the evening, and Girl Scouts twice a month.

Saturday we are usually busy with band competitions, or cheerleading or whatever we may have going on.
And we're back to Sunday.

What I didn't mention in there because it would have taken up to much room in those little paragraphs are :

Insurance-  What can I say? There is nothing nice to say about dealing with insurance at all,. We have fought for just about everything we've needed for Maggie. None of it has come easy at all.  We've fought for medical supplies, we've fought for her SSI ( its amazing , I've seen kids with ADHD on SSI but my complex child that has a million and one things wrong with her , well that was just going to be something we had to fight for)  we've fought for her to go to Cincinnati, and boy have we fought because doctors here do NOT like us going. We fought for referrals and even had some doctors refuse to give us them so we could go.  We fought for insurance to let us go. We literally had to chance insurance altogether just to go to Cincinnati.  Now we will be losing that insurance and are being forced into an HMO and so its going to be another frickin battle and not one that we're sure we're going to win this time around.  Heck I even fought Cincinnati's hospital administration because they didn't want our 7% from the Access , that we had to switch to because  doctors were refusing to give us referrals.  We won that time.  We even had to fight insurance to have a nurse come in two times a day when Maggie was in PreK because she needed a nurse, something the private school sadly didn't have.  After that fiasco we went back to homeschooling. It was a good school, but not one equipt for Maggie.  

Our hospitals and doctors:   Maggie goes to doctors in three cities and two states. Depending on the expertise we need we have to travel either way. We live 35 miles from the city as we live in a rural area.  We live 4 hours from Pittsburgh, and we live 6/7 hrs from Cincinnati, Ohio.  
I am always in contact with our urology nurse and at times Colorectal when we need to be. Right now its been urology since Maggie's bladder has not been happy at all with this surgery. Its not holding what it used to be holding. Urology is upping the dose of her one medication but it doesn't seem to be helping the problem we've been having.  So far this year we'll be making our third trip to Cincinnati and its NOT cheap , not by any means. Even families who have money have a very difficult time affording medical trips.  After being gone for 2 months , it really has sapped us financially. 
We also have to figure out how to eventually move closer to Cincinnati because of the problems we have been having. We really need to be down there to deal with them, since the doctors here at home made it clear that Maggie is a liability and that freaks them all out so they don't want to touch her.  It was a nightmare just getting the one and only pediatric urologist we have to change a supra pubic tube ( that's even a longer story in itself).   We really need to move like yesterday but for now Maggie keeps her supra pubic tube until we can figure out something. 
We're hoping we aren't going to have any problems with this new insurance and all they need is maybe a referral from her pediatrician. Even with that said Cincinnati doesn't accept this insurance because it doesn't go down that far into Ohio. But we need it to see our pediatrician here at home in PA.  I can't win. 
Not to mention most appointments seem to be set on holidays and important dates and we end up missing something the other three girls are doing.  In May we missed the last day of school for Katie and Hannah, we missed them doing their Missoula theater, and sending them to camp.  We'll be also missing Halloween with them. We've even been in the hospital for the 4th of July and  Christmas and New Years. 

Other medical stuff- We recieve LOTS of medical equipment for Maggie. So much so we actually don't have room to keep it in. We keep it in big sister's room on a shelf but its not enough room, and even some of it is in closets.  If you saw it you wouldn't believe it was all for one kid. I didn't realize how much stuff we actually have for her until we had to switch to 180 medical to get some stuff the other medical supply company we're with didn't carry for her supra pubic tube. When I inventoried it I said to the lady on the other line " Yes, this is all for one child."  We have catheters of different sizes, we have saline, we have gloves, we have two different kinds of syringes, we gauze pads , tape, surgilube, feeding bags, lubricant for her urinary catheters, we have drainage bags ( for night) , leg bags if we need to go somewhere and I don't want to mess with catherizing her. We have BZK wipes ( we wipe her with before we cath ) and alcohol wipes.  We also get some diapers , but right now can't use them because they are to thick and don't work around her supra pubic tube. As long as she isn't leaking we don't use them and let her wear her underwear, they are more of a back up should she get sick because all bets are off of anything working when she's sick and she's back to being incontient , or if she gets a UTI she leaks.  
All of this doesn't include her nightly meds of Ditropan XL and her prophylactic med ( to long to spell). Along with her Citracel to bind her up a little and her vitamin D, and any meds she needs when she does manage to get a UTI.  

Friends-  I'm not sure what those really are.  I have a definition of what I think they are, and then there is a definition of what they have or have not been in our life.  We have two types of friends:  The first being:  The we'll say hi to you or ask you for something but don't expect us to call, invite you to , or do anything with you and your family type friends.   As it stands after we had Maggie people like to pretend we only exist when they need something. Other then that , no one comes over, no one calls us.  We do see people at church and talk with them, we see people at the store, we say hello and might chat. But when it all boils down to it we're just here when its convenient for people.  Whenever we've reached out and tried to make friends in our life, people don't have the time or they are to busy. We're just good to chat with and say Hi to.  My children aren't invited to sleep overs, they aren't invited to birthday parties ( though Hannah did go to one last year), they aren't invited to come over and play . As for Tim and I we're never invited to anything , not even weddings or parties.  We are sadly overlooked and we are good people. We aren't perfect, no one is, but we're not bad, and we actually love to have fun. Heck its been a super duper long time since someone asked me to go out. Say 6 yrs to be exact. 
Then we have our online friends. These are people we may see(depending if we have money to go) once every two years at a VACTERL Conference, or we've never ever met at all. These people tend to be the ones that wished they lived nearby and we feel the same way too.
So we basically have each other, and that's it.  

Marriage- Just like any marriage we have our struggles but even more so with a special needs child. The average is something like an 80% divorce rate.  We really try hard not to be in that statistic. Its about 20% more than the national average for regular people that do not have special needs kids.  Having a special needs child puts a real strain on a marriage. My husband and I have been married for 17 yrs.  We are really trying to work at it. 

With all of this said I wouldn't change anything in the world. I can't imagine my life without my girls or without Maggie.  I can't imagine not doing the things that I do because I do feel like they make some kind of a difference. I don't regret having Maggie because we've met wonderful families, ones we wished lived close by because its hard to not feel like your the only one in the world because no one knows what VACTERL is or even how to treat it really. Maggie loves to meet other kids like her at the conferences but when we come back home she is alone and kids don't understand why she has four fingers , or why she never needs to go potty like they do , or why she has that funny bag on her leg ( we use a cover but still the kids want to know what it is.)
  If you've actually read all of this and made it this far you truly are an amazing person too because just typing it all has made me tired. 

1 comment:

jeffreymwhite1 said...

So excited to see your post, now I know why you never have time to update your blog! Believe it, or not, I pray for your marriage (not regularly, but every now and then)just because I know special needs kids do put stress on relationships. Be brave and be blessed! Kathy