Leg Watch is Winding Down!

Thank goodness! Nicks leg is looking altogether awesome again! After my last post that it was getting better it started to look redder again and I was so nervous. I talked to Allison from the RIAO and she reminded me to keep Nick’s leg elevated. This helped! She thought we could watch some more but said if it wasn’t getting better we ought to just call her and let her know and head down to Baltimore the next morning. That would have been Thursday and that moring Nick’s leg looked a whole lot better. There was still redness around two pin sites and beyond them really but it was not a whole hot-red leg!

I haven’t talked to Allison since Thursday. That’s the true marker of things being well. Her calls really helped me know that things would be ok. Cellulitis really is common and infection as a complication of leg lengthening is common but goodness when it’s your kids leg turing red, hot, swollen and shiny it does not feel common. Nick was so tired of me being on “leg watch” and “temperature patrol”. Really I would not even put a cover on his leg because I wanted to be able to see it easily and constantly.

All in all it made for a stressful week! I volunteered in Christopher’s class on Thursday and I had planned on asking if Nick could come with me. That plan was out for many reasons. One being that when Steven went to Wilmington for work he took the wheelchair and walker with him! This pretty much meant I could not take Nick anywhere. I had to figure out how to get Charlotte and Christopher to and from school. These little daily things can feel like big stresses under the circumstances. Thankfully between, Tara (sis-in-law), Diane (mom-in-law) and Beth and the McGovern’s it all got done!

Charlotte herself has been such a trooper in all this. She is the only kid in school all day and then it feels like we’re passing her around at times. The other day she said “Sad days seem to go on and on but happy days go by fast”. It’s so true but it made me sad to think she has enough sad days to realize this. She does worry about Nick and always wants to help him! Chris too, he likes to hold the flash light for me when I need it for pin care (this house has very poor lighting). Even Bess was so excited when Nicks’s foot was freed! She loves to touch his “toe-toes” and when I was on leg watch she would come with me to check Nick’s “ator” or fixator. All four kids are so loving toward each other! There is nothing that makes me happier than to witness it.

Nick is still not weight bearing. Dr. Standard wants him to try a little each day and generally he is allowed to, but he does not feel ready. With the infection this week we’ve not worked too hard to encourage him. Next week we’ll try harder. He can’t go back to school till he is stepping some. He’s gotten so comfortable having school at home with his teacher, Miss Spurr (his actual classroom teacher). She is such a wonderful teacher and person! This year has been so much easier on Nick because of her. I never thought he would be out of school for so long and yet he’s doing great. He really enjoys her company. So often I hear them laughing or I overhear Nick giving an answer to something and I marvel at how bright he is! Miss Spurr is a marvel too! Every child deserves the kind of teacher she is. Our family has loved having her around. We threw her a very little surprise party (just ice cream cake, some tiny gifts and the kids yelling surprise) for her birthday a few weeks ago and all the kids were so excited!

Miss Spurr reminds me of all the people that have come into our lives when we needed them. There are also those who have been supporting us from day one (like our fabulous family and friends). I have so much gratitude to so many and so much admiration for the Miss Spurr’s and Dr. Standards’s and nurse Lee’s of the world who can do such meaningful work so brilliantly! We’re so lucky to have them in our lives!

Cellulitis or Dermatitis? Either way it’s getting better!

Last night things got scary. Nicholas suddenly had a fever of 101.3 and it was clear the redness covered the whole front of his calf, was spreading to the back, with major swelling near his bottom three pins. In particular next to two of his old half pins with a lot of drainage. He wasn’t feeling good either. We gave him a dose of roxicet and by the time I talked to Dr.Standard his fever was down to 99.5. The fact that Nicholas’s leg really didn’t hurt and was kind of itchy was complicating things. Dr. Standard thought it could be a delayed dermatitis possibly from something they used in the surgery. We gave Nick a large dose of an antihistamine and watched for a while.

We didn’t notice a change in his leg and Nick said he felt a little nauseous but he said it was maybe just the hungry kind of nauseous so I gave him some mike and bread with butter. That helped his belly so we gave him his fourth antibiotic dose and put him to bed.

Before I went to sleep I checked his leg and it was not better but it was not worse. By five am when we gave him his next antibiotic dose his leg looked less swollen, a little less red and certainly not spreading! What a relief! Nick woke up about 7:50 which is pretty late for him and was willing to stay in bed with his DS and a little breakfast. Thank goodness his Aunt Tara was able to pick up Charlotte and take her to school. I hated the idea of making him come with me to drop her off and then I realized Steven went to Wilmington with Nick’s wheel chair and walker in the trunk of the car!

I had thought we’d be heading to the RIAO this morning. I can’t explain how it felt to be so excited about his long beautiful leg and then watch it swell and redden! Nicholas has worked so hard. He’s really had enough of this fixator so complications right now are beyond unwelcome. Now that the antibiotic seems to be working. Assuming it wasn’t the antihistamine which I guess we can’t know for sure till we talk to Dr.S or Allison… I never asked when we should give Nick more but if the swelling comes back again since I haven’t given it to him then I guess we’ll know.

Right now I am just so grateful my boy’s leg is looking better, he’s feeling ok and we’re home for the day. This fixator business is like a roller coaster ride sometimes but the light at the end of the tunnel is still shining bright. I still take a moment here and there to imagine Nicholas as a seriously handsome and tall young man with two seriously long legs! I imagine him looking down at me and smiling. He may be more than a foot taller than me!

Last night when Nick was feeling down I reminded him of what it’s all about, having his legs equal and strong and I told him that he is the strongest and bravest person I know! I reminded him that every day I look at him and think OH MY GOD that kids is awesome! His response was “And I won’t be shortened. I’m keeping my length”. Even in the hard moments Nick still has his eye on the prize and is willing to work for it! That’s my boy!

The Good, the Great and the Ugly

Wish I had updated sooner. Now there’s much to remember! First off the “Good”… Nicks ninth surgery went well. Nick was happy to have the troublesome pin out and overjoyed that his foot was free. He woke up calm and was so very happy to grab hold of his foot. He asked me to massage it quite a bit and was not in pain after surgery. Unfortunately in the evening his blood pressure was high. The nurse said he had probably gone too long without pain meds and that could be the reason. After a dose or two of roxicet it went down but it was a scary couple of hours for me! We stayed overnight so Nick could get iv antibiotics as a precaution. Having new pins put in is different than just getting parts off.

It was interesting staying in the new children’s hospital. The room really did feel spacious and despite the fact that I had two comfortable new sleep options I ended up in bed with Nick at his request. He’s a pretty cozy guy himself so it was ok. I was so worried about his blood pressure I’d have done anything to make him happy and keep him calm!

We had some familiar nurses and some new faces for us. Either way everyone was kind and very apologetic for the blips here and there when they couldn’t find things or had to go back and forth. I think it went amazingly smoothly considering how new the hospital is. It was the first shift there for some folks.

Nick had the playroom to himself again and we had fun playing wii (he even set it up). Later we played another game system in his room that I can’t remember the name of and watched a Pokemon movie. Nick wanted to stay another night! Nothing like a big flat screen, cable, video games and movies!

Since we’ve been home things have gone well. Nicks not weight bearing yet but he’s getting there which brings me to the “Great”… Nick had a great appointment with Dr. Standard yesterday. I was worried about Nick not weight bearing but Dr. S pointed out that his foot is functioning very differently now. It makes sense that it hurts to put weight on a part of his foot that didn’t really function that way before this surgery. Nicks ankle also isn’t mobil at all but Dr. S said it is normal and could be several weeks till that improves. All of this was a big relief! Then Dr. S said he thinks Nicks legs are even! We won’t know for sure till he’s standing better but even if his legs are not exactly equal, the fact that they even look to be equal is awesome! His leg does look so long! It’s great! I need to post some before and after pics! Just seeing how happy Dr. S was with Nicks leg made me happy and Nick’s grandma too (we had a really full day out in Maryland the three of us).

And now for the “Ugly” we noticed a red patch on Nick’s leg. It didn’t hurt and Dr.Standard looked at it but at that point it was unremarkable. This morning it was ugly, swollen, redder, hot,a little itchy and spreading! We started Nick on antibiotics and got in touch with the RIAO. I had never seen an infection like this. It’s cellulitis. Most likely not a big deal. We’re watching closely (I drew little dots around it to tell if it spreads) and if it does not stop spreading by eight tonight or improve some by tomorrow morning we’ll be calling back. Allison, Dr.Standards PA, said she would call tomorrow anyway. I’ve probably written this before but I do think she’s great. She has a nice calm tone, answers my questions and leaves me feeling like I know what I’m doing which at this point is watching and trying not to freak out but really it is ugly! The swelling looks painful but Nick says he’s not in pain and he has no fever.

If the antibiotics kick this infection I think we’ll go back to being great! Yesterday we got to meet two beautiful new born baby girls! We got to chat with some RIAO friends. We didn’t wait terribly long despite the fact that we showed up at 2pm apologizing for being late for our 1pm appointment only to find out our appointment was actually at 11:15am! Oh my goodness I was embarrassed. It shows how out of sorts I have been to make that kind of mistake. I have been really tired, not sleeping great, not eating well, not exercising (which I never did much of anyway but I’m thinking I need to). I feel sluggish and stressed but I think surgery, Steven’s new job and the whole moving thing are reason enough to feel this way. I just have to do something about it. At the moment that something will be getting the kids ready for bed, getting myself a glass of wine and later on watching the season premier of Mad Men! Here’s hoping the kids and Nick’s infection cooperate with my plan!

Nick’s ninth surgery

“What we see depends mainly on what we look for.”
John Lubbock

That was the quote on my morning meditation today. It makes me think of how people see Nicholas. In the fixator he gets a lot of sympathetic stares and of course the bewildered looks. People that have met Nicholas without a fixator first see him very differently. They know he is an active boy who does what he wants. They know Fibular Hemimelia does not define him.

Looking at him today I could tell he was nervous. Thank goodness for tv to distract him! The fact that we do not have cable at home makes it a real treat when we’re here. Nicholas was up past Steven and I last night.

Now we wait. I am sure Dr.Standard is done or nearly done with his part of the surgery. I am praying that Nick wakes up comfortable. I promised him a wii game before he fell asleep in the OR. And pokemon cards. I would have said yes to anything in that moment. The only thing harder than seeing him like that is walking away.

Nick is the same gorgeous, happy, kind, sparkling boy he was seven years ago when I left him in the OR for his first surgery. I am so grateful for that. Life is very different now though. His leg is different. It is so long and straight! Our family life is also completely different. Now Nick has three siblings who he was already missing yesterday. Before we left Chris and Bess had fallen asleep as I was trying to get us all out the door. They had been up since 4am! It was a hard morning. At least until Nick walked in and saw the kids asleep and said “I just love them so much”.

Dr.Standard just came out! Nick’s done. He has two new pins but the foot part is gone!!! It went great. Now I will be on the edge of my seat till we can go to him. I love him so much.

Nick’s Pre-Surgery Tour

Nick is having the foot portion of his fixator removed tomorrow and some additional wires removed and a half pin added and possibly a half pin removed that is bothering him so he might need an additional half pin. Yes that was a completely grammatically incorrect sentence but it is what’s happening. He’s mentioned his nervousness to Marilyn and she offered to take us on a little tour of the new children’s hospital. It is awesome! Nick is not as nervous and it was a wonderful distraction. Now he’s got something to look forward after surgery! He can’t wait to get back to that playroom!

I can’t post video on this blog yet but I have posted some videos on the International Center for Limb Lengthening Facebook Page and on the Fibular Hemimelia and Limb Lengthening Awareness Facebook Page.

Touring was a bit emotional for me. I realized how my perspective is so different from your average parent because this will be Nick’s ninth surgery. I know there are children who have gone through so much more than Nick and moms who might think nine surgeries is nothing but it feels like quite a journey. There were so many familiar faces in this new gorgeous setting. Even the hallways are bigger. There is a space for parents to sit and relax. Sometimes you just need a moment out if your childs sight but you dont want to leave the unit or you dont want to cry alone in a restroom. I’ve been there and its rough! Just having a place to “be” is wonderful!

Compared to the usual hospital room the rooms are enormous! And it’s all so pretty, bright, colorful and clearly created with children and families in mind! It’s no wonder considering it wad created with input from the staff and patients. Laura Cohen, a child life specialist run the show in the playroom and it shows! I found out today that she has been at Sinai about as long as I have been alive! I was shocked that she had been there so long but looking around the room you could see a lifetime’s worth of experience coming to life. No one could know better than Laura what our kids needed. She has always impressed me with way with the children and now I am so grateful to her for helping to create a place my boy is looking forward to going to. And honestly he looked forward to the old playroom but this is an whole new kind of excitement.

Because I did so much research for the job as a patient and family centered care coordinator I applied for a few months ago I could totally see the concepts of patient and family centered care come alive as we toured.

I’ll write more about Nicks surgery tomorrow. Thoughts and prayers are very much appreciated. Dr.Standard said Nick will be the very first surgery. It will probably start around 8am. Having an appointment today worked out great. Dr.Standard is so calm and kind. His confidence also made Nick feel good. Eight years later we are still so grateful to have him care for Nicholas.

I know we are in the best possible place for a kid with Fibular Hemimelia. There are so many amazing people here and now they have an amazing facility check out The New Herman & Walter Samuelson Children’s Hospital at Sinai

Congenital Limb Differences chat

Congenital Limb Differences chat with ICLL docs at Chatzy.com
Time: 8:00 PM Eastern US This is the time zone for Baltimore, MD or Washington, DC
Place: http://www.chatzy.com/600868137410 or (www.chatzy.com/limblength)
Temporary password: lldtest
Day of chat password: will be implemented the evening of the chat please email: icll@lifebridgehealth.org if you would like to attend!

It’s a great opportunity to ask the very experienced RIAO doctors your questions and to connect with other parents who might be helpful too. I often learn a lot from others questions! Email Lee for more info and the password!

International Center for Limb Lengthening Chat With a Doctor

5.7cm and Nick’s third lengthening ends!

5.7cm!!!! We could have continued and gotten to the 6cm goal but Nick said enough and what he says goes. He’s not having any pain really and he certainly isn’t taking any pain medicine. The pesky pin site infection seems to have cleared up just fine. But Nick just wants to get to the healing part of the process. He wants to go back to school. 5.7cm, plus a straightened tibia and a reconstructed ankle is pretty wonderful. Nick’s working hard and it is important for him to have a say in this. We’re a team and I like letting him lead the way when we can.

Next week he’ll have a small surgery with Dr. Standard to get the bottom portion of his fixator off and his foot will be free! He says the foot part is the most annoying so this will make him very happy. He’ll also have a wire removed from the bottom of his leg but he will need a half pin put in to add support.

In general it was a great appointment today. We were at the RIAO for a long time but it’s because we were making plans and Nick needed an additional xray because it turns out he has some knock-knee that needs to be corrected. Dr. Standard needed to measure it to create a new small schedule of turns. The lengthening is still officially over since this wont add length.

It is such an amazing journey. None of this is easy but none if it is as scary as I imagined it would be. It is also so wonderful to be at the RIAO where this rare condition is so normal! Nick is one of hundreds of children they have treated for fibular hemimelia. Seeing other people in fixators really does make it seem like less of a big deal in a way. It also helps to have support and encouragement. Marilyn and Lee are two of my favorite people. The RIAO would not be what it is without them. We got to chat today and it reminded me of how lucky we are that they are there for us!!!!! Dr. Standard is wonderful of course. I’ve written that plenty of times and so have other parents but he does not work alone. There are all kinds of necessary people at Sinai. Today’s included the valet parking men. Sadly I am literally not capable of getting the wheel chair in and out of the car. They are always so helpful! It makes my day so much less stressful. It is totally worth the usual $7 plus tip!

Then there was the stranger in the cafeteria who carried our lunch tray because she saw me struggling. That kind of kindness make such a difference! I would never have asked someone to carry it for me. She came right over and helped. Thank you random lady!

This surgery has been hard for Nick in a way that the others were not. He understands so much more but he still says it’s worth it. He can judge that for him self now and I am so glad he feels that way. I feel it too.

Fibular Hemimelia Support Group Greatness

I am proud of many things in my life. I wont go listing them in order of importance or anything but one I have to mention is the group Fibular Hemimelia & Limb Lengthening Awareness! It really is at the top of my list right now! I started it. I try to check in regularly and help when I can. I know I don’t know everything about FH. Who does? Still the thing that makes me most excited is to see other mothers and fathers sharing and supporting one another.

Tonight a mom wrote to the group about her new baby’s fh. Her post was touching on many levels. The responses she received within minutes were amazing. It sends a clear message: YOU ARE NOT ALONE.

Sharing information and supporting one another is why I started the group! Thats it and it works.

https://www.facebook.com/groups/fhlla/

“It’s not fair that I have to have a fixator

Today’s title and quote care of Nicholas of course. It does sound sad. It really feels unfair to Nick that he has a fixator but this morning it wasn’t the fixator that started this drama. It was the fact that Nick did not want to take his sister to school. He’s become a little resistant to leaving the house. I could worry that it’s some sort of psychological issue brewing but I honestly think he’s getting kind of lazy.

Having a lazy kid is a refreshingly normal problem. Life is settling into a new “normal” routine. We had settled into a “fixator life normal” and then Steven got a job. He is traveling at least two days a week. I don’t like to whine but it’s hard. I’d like to take this opportunity to tell parents who think the can’t handle this fixator life to look at me and reconsider. If I can do this on my own with four kids, I am fairly certain you can handle it too.

Thankfully I’ve had some help with school pick up and drop off but the rest is up to me. Evenings are the hardest when I have to cook dinner, do homework with Charlotte, leg wash with Nick, showers or baths all while supervising whatever’s going on while I do these things. Eyes in the back of my head would be oh so handy these days! Sometimes I’ll do leg wash in the afternoon while Bess naps. Sadly she rarely naps long enough anymore. Often I’ll wait till she’s in bed but it makes it a late night. Evenings were sometimes pretty hectic with Steven here. Doing it all alone feels miraculous when it’s done and slightly perilous while it’s happening.

Feeling like it’s not fair sounds a little familiar… Maybe I’m no different from most moms just trying to get it all done… Maybe it’s normal. I know I have to change the way I think about it. I am so glad Steven has a good job! I know it’s not easy for him to be away. Especially when he knows I’m struggling. The unfortunate answer to the travel thing is moving which is what we’ll likely be doing this summer.

Just a few hours ago Nick was feeling the unfairness of the fixator. Just now he climbed over one of the baby gates and said “Sometimes it’s like nothing having a fixator”. How’s that for a change of attitude. I think I’ll try to follow his example.

Special Needs Mom

I’ve written about the word disability in the past and how I’ve not felt it was an apt word to describe Nicholas. I don’t think I’ve written about the label “special needs”. I’ve resisted this one in the past as well.

The first time I heard it used to reference Nicholas is when a mother I met at a play group was asking me about Nicks’s leg and she said “My daughter Ann’s special needs too”. I was taken aback. I wasn’t insulted but I simply had not considered Nicholas a speical needs kid. At that time the only special thing his leg required was a shoe lift. That didn’t seem so special to me.

At the same play group another mother was starring at Nicks shoe and very loudly said “Wow, that kid is wearing moon boots”. She somehow failed to notice that only one shoe had a lift! I wanted to scream! I wanted to punch her! What I actually did was nothing. The “special needs mom” changed the subject and over five years later it sill bothers me. Mostly because I didn’t say anything! I froze.

Thankfully I never saw the rude mom again! She really was aweful beyond the moon boots comment. Still I was left with more to consider. Was Nicholas a special needs kid? Was it just another label? What did it mean?

Physical Disabilities by Lynn Moore
Physical disabilities include a wide variety of conditions that affect a child’s movement or ability to accomplish some physical task. A physical disability might be a condition that is addressed with physical therapy or some assistive device, or it can be serious enough to be life-threatening. Defining Special Needs at Netplaces.com

I guess a shoe lift isan assistive device. Sometimes Nicholas also needs an AFO (brace on his ankle). Plus the external fixator he is wearing right now looks pretty darn special to me…

Terri Mauro on about.con writes quite well on the topic and points out the functionality of the term right away. One Term, Many Definitions:

“Special Needs” is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.

Common Concerns:

Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.

“flexible, compassionate, stubborn and resilient”… If that is how a special needs mom is defined sigh me up because I hope I’ve got those qualities down! When you have to face surgeries and stares from strangers and your sometimes suffering child you need have those qualities just to get through the day! Moms of special needs kids have to hold it all together. We also have to know how to ask for help but that’s another blog post!
You can read the entire article here:Special Needs About.com

So where does all this leave my boy? Probably the same as he has always been. Eight surgeries in as many years, regular two hour road trips to The International Center for Limb Lengthening probably speak for themselves. It’s been a pretty special journey and Nicholas is beyond special and beyond my wildest dreams of what a son could be!

And if I had any doubt about wether I am in fact a special needs mom here’s some evidence… Plus Love That Max is a great blog by another special needs mom. As far as labels go I sure am in good company!

More good company… my fellow readers choice finalists!