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IMG_2292National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan.   We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck.   They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other.   We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

Joy

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img_2413While Graham and Kevin ran to the library and then to get Grace birthday cupcakes today I fed Grace. As I fed her I turned on Gilmore Girls- the pilot episode.

When I was home on maternity leave with Grace – no knowledge of what was to come- only dreams of how it would be as she grew- we watched a lot of Gilmore Girls. I loved all the relationships on the show – some complicated, some easy, some fun, some hard, all with some kind of love holding them together.

 

And the theme song…
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

As a new mom, I was sure that I’d be able to go wherever Grace led. I imagined our family as a team navigating life ahead. I never considered that we’d take an alternate path.

As I held her today in my lap, feeding her formula through a syringe and tube, watching Gilmore Girls, in some ways, it wasn’t so different from those long ago days snug in the living room of our house on Carpenter Ave. In reality, though it’s much different.

She’s four feet six inches tall now (a foot shorter than me), currently weighing in at 76 pounds. Holding her and feeding her is becoming a bit more challenging. She’s undergone several surgeries. She has seizures. Once they started we’ve never really been able to make them stop. We had to leave our little Carpenter house for a house in Johnston in order to achieve the integration and education we wanted for her. In some ways that has been brilliant, in other ways it’s a continuous struggle. We’ve never had long conversations or embarrassing ones. She did, however, the other night at dinner use her talker several times during the meal to say “I love you,” “no,” and “I want to watch TV”. She’s not playing any musical instruments, singing, or playing any competitive sports. She is, however, a pretty good tambourine player when accompanied by her music therapist, loves toys that play music, calms when I sing to her, and plays a little baseball – where no one ever loses-with Miracle League.

Way back then I’m sure I wanted her to try dancing – although I didn’t imagine the team it would take to have her dance. I’m very grateful that dream came true.

Even when we’d just had Grace we always knew we wanted a brother or sister to join her – to make our family complete. Graham has brought noise to Grace’s life and competition for our attention that she doesn’t always appreciate. This morning when she would rather have slept in Graham insisted she get up at 7 am. As Kevin went in to wake her up Graham turned out all the lights and asked me to hide in the kitchen with him so we could jump out and yell surprise when she came into the living room. I never would have thought to do that. But Graham has forced Kevin and I to think bigger. There were so many things we didn’t know about growing up based on our experience with Grace.

There are a lot of things I wish for her that I’m unsure of still.

I wish I knew that she had friends in her class in school. On tough days I find myself annoyed that any child that comes into contact with Grace seems to be referred to as her friend. I’m feeling truer friendships just won’t ever come and stick.  This does not mean that she is unloved or doesn’t have a community. It’s not the same as that. It’s so hard to explain.

I wish she could have the independence that comes with an experience like college or a trip by yourself. But she will always be dependent.

I wish for her to experience some of the really fun and beautiful places in the world but recognize it will be physically harder for her.

I wish for her to not fade as she gets older. I don’t want her to be less and less in the world.

I wish for her likes and interests to expand because as you get older the world gets bigger. Kevin and I will have to drive that for her.

All of that to say that it’s not going to be exactly the Gilmore Girls song way.

There are times we will lead Grace, way more than we ever will for Graham.

There are also times we will follow her as we work through the system of checks and balances in place for her in the world. We will also follow as her health needs, physical abilities, and communication change. And we will lead the teams and people that surround her to accommodate those changes.

It will be complicated at times, easy at others. I hope we will have fun, but the reality is there will be hard times. Through it all our future will always be based in love.

As the past 11 years have gone by I’ve often caught myself singing Grace the Gilmore Girls theme song. I still will. Even though the meaning isn’t the same as when I began singing it to her – it still applies.

So Happy Birthday Gracie Lou! I can’t believe you are 11. You are wonderful. You are kind. You are funny. You are brave. You are strong. You are quick. You should not be underestimated. I love you very, very much.

 

And …
Where you lead, I will follow
Anywhere that you tell me to
If you need, you need me to be with you
I will follow where you lead

Love, Mom

img_0955I hesitate to even write this. I hesitate to even begin. I’m not one to post on politics. I choose more often to focus on the less controversial topics that we deal with as a special needs family. My hesitation is also based on me finding myself trying really hard not to judge based on political views. I don’t want to be judged for mine.

But the truth is I am struggling. In large part, we write this blog to serve as a record of our journey with Grace. I forget. I move from one thing to the next and details get foggy.   At this time, I can’t ignore the weight of the outcomes of state and national elections on Grace or our family. It’s worth including here as part of the story.

If I boil it down to what I think might be the root of the struggle it’s the possibility that the affordable care act could be repealed and more specifically that insurance companies could again elect not to cover someone with a pre-existing condition.

When Grace was born we made all the calls and filled out all the paperwork to get her covered by my health insurance company. When Grace was 15 days old we got life insurance for her. She was diagnosed at around 5 months of age.

The life insurance agent has told us in the past we were smart to get the insurance when we did if we had waited until after she was diagnosed her policy would have been denied.

When she was diagnosed there was no such thing as the Affordable Care Act. That’s when pre-existing conditions became part of our vocabulary. We looked at changing insurance at one point but because of her diagnosis, Grace wouldn’t have been covered. Do you remember those stories about families who went bankrupt and were homeless because they were caring for the medical needs of someone they loved? Those stories have haunted me. The very first medication we gave Grace cost thousands of dollars.  A month’s supply of the medication was more than I paid for a brand new car.

Grace is expensive.   There is no getting around it. She’s also evolving, growing up. Her needs will change. It’s not just epilepsy we are dealing with. Sure that might be the first thing we say but she has more than 10 doctors. She receives physical therapy, occupational therapy, and speech therapy privately. Yes, she can get those things at school, but in reality what we get are consults from those professionals, not the intense work we are able to get through private therapy services.

Insurance makes it possible for her to have those therapies. Those therapies have helped her walk, made her stronger, addressed sensory defensiveness, allowed her to find a means of communication.

Insurance also means we can take her out of state to doctors who can care for her. Often, even living in the Des Moines area, Grace’s needs require a level of specialty not available here.

Insurance pays for the supplies she needs. Boxes of supplies show up at our home on a regular basis.

There’s also a wheelchair, braces, her talker, etc.

Yes, there’s Medicaid, but it has its limits. It’s also under fire.

Neither pays for many things she needs.  Neither pays for some of her meds. Many of the special needs adaptations that she needs or that add to her quality of life are incredibly pricey. We pay for them. We also pay for the trips out of state, for gas, hotels, food. It quickly adds up.

So my fear is that we would somehow lose insurance for her and have no means to get it back.

I wake up from dreams about losing our home because we had to care for her.

I wake up wondering what opportunities we would have to withhold from Graham because we are taking care of Grace.

I wake up feeling trapped in my job with no way of leaving because I have to care for Grace.

I also wake up knowing that there is no choice in the matter – we have to care for Grace. She’s ours. She has needs that we have to meet. However, we can. I feel the weight of that deeper somehow. It is a legitimate weight.

I have campaigned for Grace’s rights rather privately thus far. Advocating for her primarily in our church and her school. Believe it or not, that’s a lot. Plus advocating is just part of the special needs parent role. It’s separate from the paperwork, the appointments, the meetings, the actual hands-on care. The first time I advocated for her formally I was at a meeting where a county group was discussing cutting funds to her special needs daycare. The two parents before me had these incredibly powerful presentations with visual aids. I hadn’t thought about that at all. All I had was my planner. It had a huge pocket in the front and in that pocket I had a picture of Grace. When it was my turn I sat at the table, showed them my picture, apologized that I didn’t have a more polished presentation, and then told them our story. I told them about how no other daycare would take Grace. I told them how helpless it made us feel.

I feel a little of that helplessness now. Time has made me more polished I like to think. I can better describe how Grace is a whole person, worthy of what it takes to make her the best she can be. She has potential. She has character.   She is not less. She is not a liability. She is a person more the same than different.

And in reality, any of us is seconds away from being in a situation where we could be very sick or very injured and need significant help.

So I’m afraid. But life continues. I’m working on my next blog post where Graham tap dances by a singing rock…

Joy

img_3898This week started out to be the first regularly scheduled week we’ve had in some time; Monday morning it quickly changed.  Shortly before taking Grace to her morning therapies and then school she was showing signs of discomfort and then had a tonic clonic seizure.  We gave her some diazepam (valium) to stop the seizure and called 911.  Her seizure stopped and when the paramedics arrive her oxygen level was low so they started on oxygen.  Grace was still pretty out of it and her temp was up, by the time we reached the hospital it reached 104.5.

In the ER they started checking for infection running blood and urine cultures.  She was started on an antibiotic proactively and the blood culture came back positive for MRSA.  MRSA is a staph infection that is difficult to treat, while it can be a skin infection Grace shows no signs.  MRSA is easily spread in hospitals, nursing homes, etc and considering how much time she has been inpatient these past two months she could have easily acquired it.  MRSA can live on your skin and you will be just fine but when it colonizes the infection occurs; in Grace’s case it could have come in through her central line port when the needle was inserted, but there is no way to verify.

There is a chance that Grace’s port may have to be removed if they infection does not resolve with the antibiotics.  Daily blood cultures are taken and if results are negative two days in a row she could go home and continue with two weeks on IV antibiotics.

We have been having extensive conversations with infectious disease, interventional radiology (who put in Grace’s port) and nursing supervisors as there has not been a clearly documented, communicated, or followed port protocol for Grace.  We have found that health organizations have different port protocols and there can be differences within one organization.  We continued to push for clarification so we know when to ask or question if we feel that the protocol is not being followed.  All parties are now in agreeance that Grace should follow the same hematology/oncology protocols used with other children at Blank and we should defer to hematology/oncology or the Blank Infusion Center for her port cares at any time we desire.  Grace again falls in her own category and without standards to base her treatment on we have to push the envelope to establish our own protocols.

Between the home and work needs, port issues, learning about MRSA and conversations around the potential removal of her port that was put in just two months ago we have been a bit overwhelmed.

Grace has been showing signs of more energy and is sitting up and playing on her own.  Based on past sicknesses this is a really good sign.  Now we just wait for the culture results.

Grimes/Johnston EMT staff were excellent and took great care of Grace and we got to meet one of our neighbors who is an EMT.

Kevin

UPDATE 9/29 11:10 – Blood cultures drawn on yesterday are negative!  It will continue to be cultured as will the draws from this morning; if they come back negative tomorrow Grace will likely be discharged Friday.

We are home. We made it home last night. Dr. Monkeyology has returned to his spot in Grace’s room. He has once again upheld his responsibility of protecting her and serving as her comfort item during a tough time.

When my dad told Graham that we were headed home he insisted it was time for him to come home too. He did agree to wait until today though since it was a little late. He’s also been, in his own words “exhausted.”

Grace did a great job on the way home. We gave her a pretty big dose of pain meds and went for it. She played a little after we got home, not a lot. I’m encouraged by this but still a bit nervous.   I’m hoping a night in her own bed with no one interrupting her sleep will do her a world of good.

Our last two days in the hospital weren’t exactly smooth. First, we were running out of seizure meds. Grace needs to take name brand seizure meds. Generics can have a varying amount of medicine in them.   The hospital was not able to give name brand medications to her so we were using our home supply. We hadn’t planned on that and didn’t have enough with us to cover the length of a 10-day hospital stay. We actually only had enough to get her through her noon dose yesterday. It didn’t help that we’d been giving her extra meds because of the extra seizures going through what we had faster than we would have normally. I made calls to our pharmacy back here and we had a backup plan if we’d needed to stay. Since we were able to come home our neighbor Julie ended up making a trip to the pharmacy for us.   The meds were on the kitchen table when we got home and we didn’t miss a dose. (Thank you, Julie!)

Next, Grace’s blood pressure went up. Not a lot but it ran high. This was true except when she was sleeping and managed to stay asleep while they took it. The nurses were worried about it. The surgeon and his resident were a little worried about it. The hospitalist was a little worried about it but no one had a reason for it. She wasn’t complaining so I didn’t think it was the pain. It could just have been that she was tired of people messing with her. So, we are thinking that now that we are home we may just run her to her doctor here a few times over the next few days and have them check her blood pressure, just so we make sure we aren’t missing something.

Then there was pooping drama. I promise just to share the highlights! We ended up getting an x-ray to see how much poop was in Grace to make sure there was no blockage. Luckily there wasn’t a lot, so we felt comfortable bringing her home. When we were discussing the possibility of the x-ray the surgeon (not ours, the one covering for the weekend) said that he wouldn’t take the x-ray if it were his daughter because she’d need her ovaries some day and he wouldn’t want her to have the extra radiation.

I looked at him. I actually couldn’t believe he’d said that.

He quickly went on to say. “Your daughter will never use hers. Do you want the x-ray? I will do whatever you say.”   Yes, I told him. I wanted the x-ray.

We live four plus hours from Minnesota. No one in Des Moines could have done the surgery. Is something goes wrong now that we are home we are going to have to drive back to Minnesota. Many of the staff at the hospital, and the surgeon himself had commented to us during her stay that they see kids from a 5 state area with this procedure. Even though they talked about it, it is like they didn’t realize that it’s a really big deal to be that far away from the doctor who just rearranged your child’s insides and was sending you home with a kid still in pain, with holes and tubes in her that weren’t there before. I needed to know exactly what we were dealing with.

I stuffed the feelings I had about the “your daughter won’t use her ovaries” comment somewhere deep inside me because frankly you can’t deal with that stuff in the hospital. I’ll have to flesh that out now that we are home.

It took us forever to get Grace ready for bed last night. She came home with two catheters in her that we need to take care of for the next three weeks. At the end of the three weeks we will drive her to Minnesota and they both will come out. There is a lot to taking care of them that we haven’t done before. Kevin and I got it figured out. Our combined tired brains were able to get it done. I’m confident we will get better at is as we go. What choice do we have?

For those of you that pray, we need those tubes to stay right where they are for the next three weeks and we’d appreciate your prayers.

Starting as early as Sunday nurses started coming into the room at the end of their shift and saying “It has been a pleasure to know you, but I hope to never see you again.” They don’t want Grace to have to be in the hospital again. They don’t want her to have to undergo something this major again. Neither do I. But the reality is I don’t know what the future holds with Grace. We are making it up as we going along.  Following her lead.

Joy