A clean slate - December 30, 2009

I was looking forward to changing the calendar to the next year, it means I get to turn the page in Sadie’s medical book and start clean.

When Sadie was first diagnosed 11 years ago, someone told me (probably my mom) to keep a journal with the dates of appointments and a small summary of events. Maybe I didn’t’ take the advise cause I didn’t think this process would be this long. Maybe I didn’t take the advise cause I was ignorant. Whatever it may have been… I didn’t listen in the beginning.



In 2005 when Sadie’s condition took a swing in a direction it had not yet been in… I decided it was time to start keeping track. I grabbed a wire bound note book and started to write down the dates she had appointments and a very small summary of what was done at that appointment. In addition to this I keep a file folder for each year – one that holds all the insurance EOB’s – one that holds all the other information (blood tests, clinic notes, etc). For several years I have let the years in this folder run together, but today I am turning the page in hopes for a cleaner year.

I can’t say how helpful it has been to have this folder when I need to refer to a previous appointment or when an MRI, X-ray or when a medication change took place. If you are dealing with any type of chronic medical issue, this is a priceless tool.



Happy New Year - we pray for health and happiness for all in the New Year!

I honestly have no clue how to write all this out so I will attempt my very best…
Sadie’s first injection of Humira went much better than expected. Yes, it hurt, but she said not at all as bad as injections she remembers from years ago. Round two of that is coming up soon.

Sadie saw Dr. M (the surgeon) today and as expected he did recommend another surgery. As Dr. M put’s it “it isn’t a matter of if, it’s a matter of when”. The reason he said that is because none of Sadie’s options are ideal for someone her age and the very best thing would be to prolong any of the options as long as possible. The first surgical option would not be a guarantee… they would cut part of the calcanus bone (the heal bone) and move it back over the correct position (right now that bone is aligned under her ankle when it should be aligned with her tibia – most if not all of the pain she is dealing with is due to an impingement that is caused by this bone, and a few others, that are not in their proper position). There is no guarantee if the bone would stay where placed… could stay that way for good, could slip back in a month… we wouldn’t know until we tried.

My question for Dr. M was “knowing all you know of her case, where do you see her in the future and is this proposed surgery just a band aid for something bigger down the road and if so, why put her through a maybe?”. His answer was… he believes that it is just a matter of time before Sadie needs to have her subtaylor (the joint that allows your ankle to move side-to-side) fused. He hesitates to do this because “fusing the subtaylor is proven to put a lot of stress on the ankle joint (the joint that allows your ankle to move up and down) which causes the ankle joint to require fusing also. Fusing the ankle joint often puts stress up stream, meaning knee, hip”. He further explained that it is very clear that Sadie’s ankle joint is all ready under a lot of stress, so to fuse the subtaylor will lead to the requirement of fusing the ankle probably sooner than later. I followed this with asking what happens to range of motion when the ankle joint is fused? His response “it is life changing”. All that said… Dr. M feels the fusion is more likely the better direction HOWEVER, he asked Sadie to try ONE more option to hopefully buy her some time.

Sadie was fitted today for a large brace, I say large because she has worn orthotic braces in the past, but usually ones that only come above her ankle. This time she is going to wear one that cuts at the knee. The goal of this is to make the brace custom to fit Sadie after someone holds her ankle in a more “proper” position by manipulating the calcanius bone into the proper location. This brace will cause Sadie to have little to no movement in her subtaylor joint, but hopefully will cause the bones that are meeting due to deformity to no longer touch. IF this brace works, it will buy Sadie time. The brace will not be here for a few weeks and once fitted for this she will visit with Dr. M again. AT that point we will find out if she has to wear this 24hours a day or if she has the ability to remove it for sleeping, home, etc. The brace is big, it is going to be uncomfortable and anyone that knows Sadie knows that she would rather not draw attention to herself. It was a hard day for Sadie to have to be fitted for this but to also know that her ankle is in such a way that it WILL require a much larger surgery at some point. She is not interested in that option as you can imagine.

Sadie has one further PT appointment before the New Year and then it looks like she has a week off from appointments!

This is kind of where things stand for the time being. We will get the brace right after the new year and then she will give it the 30 day trial run she agreed to.
Obviously you can pray for her physical health, her spirits, a miracle healing.

Our family would like to just take a moment to thank everyone for their prayers and support over this last year. Sadie has really had a fabulous year growing from a girl to a young lady. She is a huge joy to our family and a blessing to many who know her. We know there are so many needs in this world that can use your time and prayer and we feel humbled and blessed that you have diligently kept Sadie close to your thoughts, prayers and hearts. We wish each and everyone who reads this, regardless of how well we know you, a very Merry Christmas. We pray that in 2010 you grow closer to the Lord and have ears to hear his calling for you. Thank you from the depth of our hearts!
Love, The Jordan Family

Photo's from Jingle Bell 2009

We had another successful and fun Jingle Bell Walk. Thank you to everyone who supported us and a big Thank you to our team for joining us early in the morning on a chilly day! We hope you will consider joining us for 2010!

December 9, 2009 ~ times of change

I know it has been awhile since I updated. For the most part Sadie is doing great! Her left knee pain is 99.5% healed which is a huge praise as that was the majority of the surgical pain she was feeling. She saw physical therapy the first of the month and they felt she needs to continue to stay in the walking boot until the 18th when she is outside the house. She is to not wear the boot in the house to get that ankle more mobile.

Yesterday she had an appointment with her rheumatologist which turned out to be quite the surprising visit. I have shared before and will share again that I find it is a dangerous thing to walk into any appointment thinking you know what is ahead. The times I have done that are the times I am caught the most of guard and that was the case yesterday. I am going to try and sum up a very long appointment very quickly, I apologize for being vague and for leaving any questions unanswered.

Due to the amount of inflammation that was removed during surgery on her right ankle Dr. W is fairly concerned with the fact that Sadie’s body might be building a tolerance to Remicade. Sadie has been taking Remicade since March 2006 and it is proven that at some point some people will build up a tolerance to this medication. So, Dr. W feels that if we continue to treat with Remicade we could be leading Sadie down the same path to another surgery of the same kind in the next few years. So, she has changed her medications to a medication called Humera. Sadie has never taken this medication before and most often patience have one injection every two weeks, but Dr. W feels Sadie needs to do one injection weekly. In addition, they have removed her from Methotrexate and started a medication called cellcept. I literally know nothing of this medication other then what we were told in clinic and a very small amount of information I can find online. It is commonly used for those receiving a transplanted organ and now commonly used for Lupus patience. This medication is an immune suppressant just as methotrexate was.

Some other things to let people know… Sadie dislikes shots a lot! I know it sounds a bit backwards, but Sadie would have blood draws and IV’s every day if it meant she never again had to have a shot. This comes from the old days (years ago) of methotrexate injections, which burned (it’s not the poke, it’s the medication going in that hurts). One of her first questions was “will this injection hurt?” to which was replied “yes, many people say it is the same or a bit worse than methotrexate”. Obviously, this causes her some concern. We are going to do her first injection on Saturday, so we could all use your prayer around that!!! I have some general concerns that I am just not going to voice right now, in the mean time I am just going to PRAY that the Lord protects Sadie, gives us peace, wisdom and strength during these changes and that ultimately we continue to trust the He has her in his hands and she is His.

As for what is ahead: Sadie had a bone density test Monday of next week and then will see the surgeon (Dr. M) the end of next week. I am both looking forward too and nervous for that appointment! I will update how the first injection goes after we get past that this weekend.

I ask for continued prayer for our girl and for our family. It ultimately would be our strongest desire that she be healed... just have this thorn removed, but if that is not His will for her life, then we pray for her strength, for her to trust Him in all things regardless of her understanding and that we too would look to him for comfort and nothing else. It has been apparent that these changes are causing a bit of stress in our house and I just pray for His peace to cover all of us. Thank you and God Bless!

One last note; Sadie and I have been having great discussions about her first blog posting... she is both excited and a little nervous about this, so we just wait until she is ready. I did want to share something that came out of those discussions though: Late spring, early summer were really great months for Sadie, she was doing really well physically and she was reflecting on what that was like for her. She was talking about how glad she is that even though doing some of the same things she did in summer might cause her pain, that she is always glad she tries something even if it causes pain rather then never thinking she could do it at all. I love her spirit and that even though she sits with pain she is thinking of how grateful she is to at least be able to try! Yep, I am bragging on my girl, but I get to do that from time to time!

November 29, 2009

A lot has happened in 9 days. We just got back to town today after enjoying some time with family in S. Oregon. The day before we left she had tried to put more pressure on the left leg than before and at one point it was so painful that she had to stay where she was and ice for about 30 mins. So, the day we arrived she was pretty apprehensive to put any pressure on her leg again. When we arrived Sadie was still on a pretty constant stream of pain medication (although we started the fazing out before we had left) and she was in the wheelchair. Another "day before we arrived" issue was that Sadie really felt the urge to put weight on her right foot, but due to doctors orders I told her no until I got a call back from the doctors stating this was okay. I called Monday, no return call Tuesday, but Wednesday they called late evening and said she had the okay to bear weight as she felt she could tolerate (at this point 2 weeks before it was "planned" to put weight). Wednesday night she got up the courage to try walking knowing she could put weight on both legs and although at times she was worn out and sore, she never looked back. The wheelchair was parked and not in use the rest of the trip. She occasionally walks 100% on her own (still in the boot on the right side) and occasionally she will use her crutches if she feels like she is running out to steam or is a little more sore. Today she has only required 2 Tylenol all day!!! Tomorrow Sadie will head back to school and Tuesday she will head to PT where I feel they will be very happy with her progress and we will find out how they feel about her having the boot removed.

Sadie's left knee seems to be less and less (if at all) of an issue now; the doctors were 100% right when they said she would turn a corner and do much better... she is! As far as her ankle; the boot does help protect her a lot, but she continues to have this off at night and today she did put weight on it for about 5 steps without the boot. For the most part her ankle is doing good. Last night she was complaining of some pain in the area of her heal and that would be the big concern (and prayer request) as this is the area that could require future surgery if it will be needed. Obviously we will know sooner than later if that is required.

I can not state enough how much the prayers have meant to us... obviously God is protecting her and the worst is behind her for this one!

I will update after PT on Tuesday and then will probably only do updates as we have appointments. Thank you again for all your support, encouragement and love!

November 20, 2009

Today we are back at Children's but this time it is for her regular Remicade infusion. It is a busy day in the infusion center today... which means it will be slow going here. For those that are newer to reading this blog; Sadie undergoes Remicade (name of medication) infusions (which just means by IV) every 4 weeks. Remicade is a medication used to control the over active immune system that causes rheumatoid arthritis. A typical Remicade (I will often refer to this as remi) takes about around 5 hours. This medication is the longest medication that has worked for Sadie so we are very grateful that we have found something that her body responds well too. She has been doing these infusions for 3.5 years (which is really hard to believe). We arrived today at 2:30 and we expect that we will be here until around 7:30 tonight.

Sadie has been doing increasingly well over the last few days. We have timed out her pain medication as far between as we can and for the first time today I gave the lowest dose I could and she is tolerating that. The doctors were right, once she turned a corner, she was good. If she moves to quick or puts pressure on her knee she experiences pain, but just sitting she says it's about a 2; she knows she has a knee, but it isn't horribly painful anymore. Yesterday and today she has put a tiny bit of weight on her left leg, that is painful! I think some of that pain comes from not using that leg at all for 10 days and obviously some is just from the surgery. We are prayerful that we can get her putting more weight on that leg this weekend. This will require quite a bit of her and so if you can pray that she is will to push herself while knowing what truly is too much and that we can clearly discern between what is her needing to be pushed and her truly having too much.

For the next three weeks we have one appointment a week, however we added a second appointment after Thanksgiving to start physical therapy; that might add a few more appointments to the plan. Hopefully she will be able to do most of her therapy locally, but we shall see how the next week progresses. I am excited for her recovery and I look forward to three weeks from now when she can start putting weight on her ankle and we know how much pain relief came from the surgery.


For each new morning with its light,
For rest and shelter of the night,
For health and food,
For love and friends,
For everything Thy goodness sends.

--Ralph Waldo Emerson (1803-1882)

Happy Thanksgiving!

November 17, 2009

Today was a better day, a much better day! Sadie still wasn't able to get to sleep last night, but the goods news is that she is feeling really good today. She has been battling some stomach issues since surgery and today is the first day she hasn't had a stomach ache. She also has an appetite today. In addition she is doing better with her pain... moving more and only complaining of a 4 (sometimes 5) on the pain scale.

Two things different:
1) New pain medication. I think this is what is helping her tummy, her appetite and maybe her pain; it is possible that he body just doesn't do well on the other medication.

2) She started her anti-inflammatory medications again today (these were held off for a week prior and a week after surgery due to the fact they can thin your blood). I am sure this is helping her pain quite a bit too!

Today was a much better day! Thank you for allowing me to be real about the ups and downs of watching our girl battle through the ups and downs of surgery. I appreciate the many of you who have lifted our girl up in prayer and encouraged us through this time. God is faithful and He always provides the strength needed for each day!

November 16, 2009 - where's the arch??

I didn't update anything yesterday because I truly didn't have anything positive to say. We all seemed to wake up on the wrong side of the bed (or couch). We all missed going to church. We all felt tired, run down and a little short with each other. Sadie continued to deal with a high amount of pain in her left knee and we realized we had made no plan for the week ahead (Total blessing that Billy is home, yet we still feel we could use more bodies to get to all the places and do all that needs to be done). I really had nothing positive to say.

Sadie has struggled to sleep the last few nights (4 nights) and last night was the first time she wasn't staring at the wall until past midnight; we all needed the rest, especially her, rest does the body good. Today I decided I needed a better understanding on how long Sadie should be feeling a high level of pain. When I called and talked to Dr. M's nurse she decided it might be best to see Sadie today. So, off to Children's we went this afternoon.

First, her left knee: This has been the most painful area; on a pain scale of 0-10 (0=no pain/10=most pain you have ever felt) she often still reports pain of 6 or more. Dr. M looked at her knee and felt that the swelling that is present was within normal range and that the incisions sites looked good. He said that they did a ton of work on that knee and it is generally just a very painful surgery. Dr. M feels that within a week (of today's visit, this I confirmed) she should turn a corner and start really feeling well again.

I can't remember if I ever explained this surgery very well; I tried to find something online that could explain it better than I can, but wasn't successful. I know that I covered a bit about why the surgery was needed and how it was found it was needed now when I talked about the day before. The surgery is done by four incisions made around the knee, two above and two below. Through those incisions they take a drill and drill into the growth plate several times at each location. This causes any soft growth plate to create a void within itself in which the void will turn to bone (the bodies way of healing). However, there is no way to know if the place they are drilling is in soft growth plate or into bone so they do this over and over again. The pain that Sadie is experiencing is from damaged bone.

Next the right ankle: Dr. M decided that she could take her cast off today; so that was removed and for the first time we got to see the "small" incision that was made in order to clean out her ankle.

For some reason I don't look at this and think small!

Sadie will be in a "walking boot" with limitation of no weight bearing for the next 3 weeks. On week 4-5-6 post surgery she can start to put weight on her foot as she can tolerate. By week 7-8 she should be feeling the results of surgery and prayerfully she will be feeling relief from the pain that caused the surgery in the first place.

As you can see Sadie's foot is quite swollen still; hence the comment where's the arch?

Lastly, other changes: they have changes Sadie's pain medications in hope that her pain medications were part of the reason that she wasn't able to sleep. Time will tell as we quickly approach bed time.

All and all: it was a good appointment, no infection or issues with the surgery sites. Obviously we don't want her in pain, but we now at least know how long to expect this and that there is a goal to look forward too, that turning point! I thank you all for your continued prayer for her recovery, healing and for her spirit. At this point she has doctors order to say put and let the knee heal so we will be keeping her home.

November 14, 2009

Today was probably Sadie's best day yet. She has less pain and we have taken her pain medication down a tiny bit. She did have a few episodes of higher pain, but she also had the most active day since surgery today, so that might have been the contributing factor.

Today we had the doctors approval to remove the ace bandage and to put new gauze and a new wrap on her left knee. I am only sharing the less detailed pictures as it was pretty yucky, but Sadie actually enjoyed finally being able to see what was done.

You can tell her left knee is still very swollen, but the stitches looked really good and like they are healing well.

We were able to get outside for a very short walk, but it was great to get some fresh air for all of us. We just walked about 1 block, but even that was a blessing.



Sadie also had visitors today. Her Grandpa Duane and Grandma Kelly came by for a short visit and the Caceres Family came to watch UP with us. Sadie was pretty worn out around dinner time and pretty much laid low the rest of the night.

We decided against going to church tomorrow, it just is a bigger outing that we think she is ready for just yet, but we do hope that we will be able to get another walk in and a test run of getting in and out of the car.

As a quick side note... still no fever and the itching is gone (and no appearance of shingles!)! This is obviously a huge praise!!! We may attempt a vlog tomorrow (video blog) where Sadie can tell you for herself how her day went. We will see if she is up for it. In our attempts tonight we accomplished only one thing... laughter!

God Bless

taking a stand...

I wanted to give another quick update this evening.

Here are Sadie's surgery sites right after surgery.

This is her today...

with the help of dad, Sadie was able to put some weight on her left leg today for about 10 seconds. It does cause her a bit of pain in her knee, but we were proud she tried (her own idea). She did it one other time later in the night to see the snow (yes, I said snow!).

Today was a good day... pain is getting better every day and she even took less pain medication today and I talked to the ortho nurse who gave us suggestions on how to slowly wean her off medications, but she also advised there is no rush and that it is perfectly acceptable for her to need some pain medication for a few weeks.

Sadie was able to sit and do some crafts today for about 15 minutes at a time and then would be pretty worn out. We are so grateful for each and every step forward!!

Thank you for your continued prayers. God is good!

November 13, 2009 a.m.

Quick updated: overnight - NO FEVER. overnight - NO ADDITIONAL RASH.

Sadie slept really well last night! I slept like I was hovering over a new born!

More later as the day moves on...

November 12, 2009 x 2

Sadie needs prayer...

Earlier this afternoon Sadie was having some issues with itching on her back. When I questioned the exact location of the itching, it happened to be in the same place as where she had a shingles out-break in October 2008. Later in the afternoon she was saying she was having stinging pain in that same location. Then it went back to itching. I couldn't see anything and anything I thought I saw I was sure I had created in my mind. However, the problem continues. At around 4pm, Sadie turned white as a ghost and she has thick red bags around her eyes. I asked if she was okay and she said she just felt off. Off seems understandable right now. When we ate dinner tonight Sadie had no appetite, we were serving one of her favorite things, so I just really started to put everything together then (I had thought of it all earlier, but was/am in denial). We got her settled and took her temperature - 99.4. This might not seem like a big deal, but to me, it doesn't feel right. Not with the back issue, no appetite, small fever (mind you while on Tylenol every 4 hours).

I have called Children's; they weren't helpful, they advised that we should call her primary care doctor. I am more than happy to do that, but she is going to advise us to head to the ER. I just looked at her back again and to me it looks like a small pattern is starting to appear.

We are going to wait this out a bit... the ER is about the last place I want to go, but should we need, we will. I am going to watch her fever, watch her back and if needed make a call to the doctor and beg that we don't have to sit in the ER lobby. I will admit that I might be over-reacting, but I guess I feel better doing that rather than not reacting to a situation that needs attention.

Please join us praying against this situation. I pray the small fever is just her bodies way of fighting off anything that might be brewing from the surgery (which is normal). I pray it isn't shingles... that is an automatic ticket to isolation at Children's. I pray it isn't anything she was exposed to at the hospital. I pray it just resolves itself and that if I doesn't that we have the wisdom and discernment to do the right thing at the right time.

On another note... Sadie's pain is lessening... Thank the Lord! She is starting to feel her stitches in her cast and that is an odd feeling, but not painful. Her knee is still giving her more pain then her ankle, but all and all she is improving in this area!

God Bless!

November 12, 2009

Home is what the doctor ordered. I am very pleased to report that Sadie was able to get a TON of sleep last night. It seems like her body knew just when to wake up for medicine because not once did I have to rely on the alarm I set to keep us on track. Rather then getting a few minutes of sleep at a time Sadie was able to get few hours of sleep at a time. Right now (and for the foreseeable future) Sadie will remain downstairs and I will sleep down here with her until she is ready to move back upstairs. There are several logistical issues that have to be ironed out in regards to generally getting around, but we are quickly figuring out a system that works.

Sadie's pain is about the same (which I am going to say is a BIG PRAISE)... I had concerns that it might get worse, but that isn't the case. Her right ankle pain is about a 3 on a pain scale 0-10 and her left is about a 6 or 7 on the same scale. The only other issues is that she is very itchy... I have no clue why. I know that morphine can make you itchy, but that should be well out of her system by now. I do continue to check her for hives, but nothing like that is the case, so I continue to give her benedryl to help her deal with that.

So right now we are plugging along. Thank you, thank you, thank you for all your support and love.

the day after (part3 and final)

We are home!!!!! It is SO nice to be home, so why I feel even more on edge now doesn't make much sense, but I do. We literally sat in her room, papers signed to leave trying to decide if we were doing the right thing. Nurses and Pain specialists all talking it out together; ultimately they left it up to us as Sadie's pain in her right knee is still pretty bad and coming home means the loss of many options. One of the nurses said "I think a lot of anxiety Sadie is feeling is because of the room"; although the shared room situation got better, the poor girl next to us was in horrible pain this afternoon and it was very hard to listen too. 80% of the way home I was doubting our decision. Getting her in the car (oh, yeah... Dr. M said "don't put weight on the left foot if it causes pain" - that's almost funny! and PT said they expect that she start putting weight on the left side gingerly within 7 days) was a nightmare, but I am so excited to say that my prayers on the way home to find an easy way to get her from car, up the front steps to the couch were answered... getting her settled was much easier. We got home just in time to keep her pain medication on schedule and now she is trying to get comfortable. She is still in a lot of pain (currently on both sides). It might be another long night, but at least we are in the comfort of our home! Thank you for all your prayers... one HUGE praise I have is that Sadie remained healthy before the surgery. With all the bugs going around, her staying healthy was a major concern of mine. In that you can be praying for continued health. While loading Sadie in the car one of the head nurses called to say that one of the nurses Sadie had yesterday caring for her has come down with a high fever and cough; they aren't sure what it is, but want us to watch her extra carefully the next few days.

Again I just want to thank everyone for their support in email/text/calls/cards/flowers/blog notes... it has been really a tremendous help to know Sadie is being thought of and prayed over!!

Thank you and Good night!!

the day after (part2)

She's going home today... YEAHHHHHHH!!!!

She wont' be leaving until later this afternoon; we need to monitor her pain still closely, but the higher dose of Oxycodone seems to have really done the trick. We will be waiting for the wheelchair and prescriptions and some clarifications on meds she is to take and ones she is not to take. Dr. M came in and talked to her a bit ago and explained the possibility of another surgery, but also expressed his hope that we can put that off for some time, but it will depends on how she feels in several weeks.

I will update more when I can... it might be a crazy day, but it is great news that she is on the path to getting HOME!

Thank you for all your prayers. Sadie has been peacefully resting since my last updated with some interruptions by doctors, etc, but has been able to slip right back into sleep. When she is awake she is extremely tired, but considering the night, I am not surprised.

the day after (part1)

The ortho docs just did rounds and the big press today will be getting Sadie's pain under control. That is what is needed to get her home. At the moment, Sadie is resting for only the second time during the night. At best she has slept a combined 2 hours, either due to pain or just generally not comfortable. I have never seen the girl fidget so much; it was painful to watch because there is nothing I could do to help her and nothing she was doing was making her feel any better. At about 5:00 am they gave her some Benadryl for itching and that put her to sleep about 5:30. It was the most solid sleep I have seen her have all night. The doctors came in at 6:15 and had to wake her up and she is now trying to go back to sleep as she feels really tired.

Pain wise she is bouncing all over... her left leg, then her right ankle, then both. She is jumping from a pain level of 4 to pain level of 8 and it really hasn't been managed all that well. Morphine seems to help for a very short time, but causes her to have a massive headache so she as requested to have it no more. Toradol is a heavy anti-inflammatory they are giving her every six hours by IV, but she can't be on that to go home. They just gave her a dose at 6am and that was the final order in hopes that she won't need it anymore. Oxycodone is the other pain medication they are using and the doctor is not happy with her pain level so is doubling the dose. He feels that will help break her through the pain and get her home.

A huge praise is that he did say she can put limited weight on her left foot. He doesn't want her using it to walk around or anything, but she can place weight on it to get more easily in and out of the restroom. The three times she has had to go, I have had to lift her (twice with the help of a nurse and once without) and it is scary (she feels and I feel like she is going to fall) and it causes her pain. Going to the restroom is a 40+minute adventure so I am glad to know that she can at least put that foot down to pivot herself from one position to another!!!

I pray that I will be sending a message that says we are coming home later today. Please pray for Sadie's pain level and that the doctors can get the right dosage on the pain medication to give her the relief she needs! Also that she can get some rest today... it truly was a very long night for her.


And He has said to me, "My grace is sufficient for you, for power is perfected in weakness." Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. ~2 Corinthians 12:9

the day of...

Today was surgery and currently Sadie is sleeping. Surgery started late... about an hour late, she was very brave in the face of a lot of fears when heading to the OR. She did amazing! The surgery took 2hours and 45 mins which was MUCH faster that we expected. I jumped out of my seat when the pager went off to tell us the surgeon was ready to see us.

Dr. M said that surgery went well, her right ankle had a ton of stuff taken out of it (hand full) and he does feel that another surgery will probably be needed, but he would like to push it out as long as possible. We will know in about 2 weeks how much relief this surgery gives her and that will gauge the timing of the one to come (which would include reconstructing the bones in her foot to line up properly). Dr. M didn't feel that her staying in a hard cast for 4 weeks will be needed as he originally thought; so the plan is that the cast will come off when he sees her next week and she will go into a non-weight bearing boot. This is great news because it gives her a chance to take the boot off, bathe and just have some fresh air.

The left leg, where the growth surgery took place; all went well in surgery.

After talking to Dr. M we were taken to the room Sadie would be staying and waited for her (for over an hour) to get out of the recovery center. She came to us awake, but very groggy. She stayed awake for a few hours, drank water, ate crackers, then a meal, then back to sleep. There are two big issues at this point: 1) her left leg is extremely sore. even morphine didn't cut the pain (on a scale of 0-10 she is saying about a 8). They gave her another type of pain medication, tried repositioning it (which caused even more pain) and then the doctor came to see her. He said that the left leg will be way more painful over the next few days/week than the right side because of the fact they had to drill into her growth plate. Obviously this is no fun, but we will be diligent to stay on top of the pain and be on our knees that the Lord will help her tolerate the healing process. 2) we are in a shared room. I know this might come across selfish or uncaring, but the first two hours of being in this room have been NO fun. The person we are sharing with has been very unkind in the words spoken to the nursing staff (staying they are incompetent and unkind - both are not true) and talking about "barfing" and then full out screaming. We have asked both the charge nurse and a doctor to be moved and we are still here. What I will give as a huge praise is that I called a dear friend and said, please bury this in prayer cause it is really hard on Sadie (she was trying to plug her ears... trying to say "just be strong".... trying to cope with listening to this other child) and within 15 mins of me making that call, the child has fallen asleep. Thank the Lord! Please pray around this shared room situation. We want to make the best of it, but want Sadie to get the rest she needs to heal.

I am going to sign off for now... thank you for all the texts/emails/phone calls - we didn't get many of them until recently, but we knew we were being thought of and prayed over and that is greatly appreciated. God is good; He brought Sadie through the surgery safely, she remembers what she wanted to remember (even with the pre-med) and even cracked a joke to the nurses before she fell asleep.

Thank you and God Bless!!!

the day before...

On the way to the pre-operation appointments today, Sadie and I talked about how we never got around to her posting her pre-surgery thoughts as intended. Then we talked about sitting together tonight and doing the post together on the appointments today and her feelings going forward into tomorrow. Here I sit, her packing for the hospital stay, overwhelmed by the information today and clearly not in the mood to write anything about tomorrow. "You update it mom, you are so much better at saying what's on your mind".

So, without saying what's on my mind, I will give you the information:

1) registration 9:15 - surgery 10:30.
2) she will be in the hospital for 24 hours, hopefully no more.
3) they will be getting out the very obvious "marbles" that don't belong there and Dr. M expects to find a lot of inflammatory tissue and remove any all pannas that is present.
4) then there was more...

Sadie had xrays before meeting with the doctor today; he looked at those xrays and said... "Sadie's calcaneus is not lined up with the tibia as it should be, but it has shifted to be under the fibula which is causing some bone on bone issue which I am sure is why she is in pain". hmmmmmmmmm??? So, rather then going back in forth with our dialog, I will just tell you that another surgery looms... when? not sure yet, but we should know more tomorrow. He wants to look in there to see what the problem looks like from the inside and then see. I think he also wants to see if we can buy Sadie some time before this surgery to correct the placement of the calcaneus in the correct position. The surgery would involve cutting bone and placing it in the correct position - to place a bone... things must hold it there, so he is not really jazzed about doing this until Sadie is in dire need!
All this came as a surprise, not totally, but somewhat. The reason for this problem is just the ongoing disease in that ankle joint and the damage it has created and the compensation her foot has gone through for a long time to make weight bearing possible.

This is the best picture I could come up with... the Calcaneus on Sadie's ankle is shifted all the way to the outsdie.. toward the fibula and is not supporting the tibia at all.

Onto another subject: growth. We have a post operations follow up in mid-December, but I told Dr. M that appointment was scheduled months before this surgery was in our minds, the appointment was to monitor her growth in her right leg and the fact that leg is shorter. Because she will not be weight bearing in December, he opted to do xrays to confirm the leg difference and to see where her growth plates were (bone age). The did the xrays of her legs and then also of her left hand (which shows how "open" or "closed" the growth plates are and ultimately tell you how "old" your bones are). We were told to do the xrays and leave and we will discuss those in December.

We drive away... get to the stop sign at the bottom of Children's drive way and get a call "um, this is Dr. M's nurse... are you nearby? well, Dr. M would like to talk to you, can you come back".

I immediately had a feeling it was about the xray results so as turning around and re-parking - Sadie and I talked about it.

We get back in the room we were previously in, Dr. M is there within seconds to explain that Sadie's bone growth is a year older than her age. He said he thought she probably had 2 years, but the xrays tell us she only has about a year of growth left. After much discussion (I mean tons... calculations, measurements, etc) he advised that he felt cutting the growth plates on the left side should be done tomorrow. With that he feels there is still a chance her legs will not catch up 100%, but they "might" get within the "normal" leg differential range (we all have a small difference, but usually to small to notice). He explained the procedure; he explained what it looked like if we didn't do it; he explained what it looked like if she wanted to do it AFTER her bones were done growing (which include removing a section of bone and inserting a rod); he explained why that option doesn't work for kids with JRA. The greatest part of all this... he explained this directly to Sadie and made sure she clearly understood. The he again suggested we do it tomorrow, she will all ready be under and it just shouldn't' wait.

Sadie's big concern was that it means she is done growing and although she is tall, she doesn't feel "done". Dr. M explained that girls spines grow about 2 years AFTER the lower extremities, so she probably will grow between 2-3 more inches within the next three years. This helped her feel much better about the procedure.

The other big thing is that she will not be able to put weight on her left leg for 7-10 days. Usually if you have this procedure you can use crutches for those days, but since Sadie will be having surgery on her ankle too she will not be able to put weight on either leg for that time. Obviously this will bring a set of challenges, but finding the good is that she won't have to undergo anaesthesia more than once, which is a big deal.

One of Sadie's "feelings" she was planning to write about is the fact that she can't "remember" before and after surgery. She said it is a strange feeling to just not remember, but know it happened. The nurse made a great comment to her today when she shared this concern which was "giving control up can be a very hard thing to do". I thought this was a very interesting way of putting this as I have never had surgery myself and don't know what it is like, however, I do know what it is like to feel like you don't have control over something.

So, today came with a lot of things we didn't expect... it also came with new information and new plans. However, I feel very grateful that Billy is able to be with us tomorrow - God's plan! That the xrays were done today for the growth surgery (maybe we would have missed an opportunity or she would have had to undergo another surgery very soon)- God's plan! I am grateful that she has an amazing doctor - God's plan! I am glad that we have Children's Hospital (even though I struggle sometimes with sadness that Sadie knows this place too well, too young). I am grateful for our family and friends. Thank you for all who have been praying and will be praying.

There is much to pray for tomorrow, Sadie's procedures, her protection, her healing. For the doctors wisdom, patience and attention. For the staff that has to coordinate all that goes into each single surgery. For myself and Billy as we wait to hear how she is and the heartache that comes in being patient. Any one of these places and probably many more I am not thinking of need attention in prayer.

I will keep you all updated tomorrow as things progress. Although they say the surgery will take about 3 hours, we know from past experience, it is usually longer.

Why the new blog???

This site is the graduate of Sadie’s caringbridge site. Since 2005 I (her mother) have kept an online diary of Sadie’s journey with JRA and here I will continue. Slowly we will transition Sadie into journaling for herself. This journal is intended to keep family and friends up to date on her current medical situation, treatments and so that those who care can pray with us for our sweet girl.

To read more about the start of this journey you can click here to read Sadie's story.

October 27, 2009

My first updated here for Sadie. Sadie will be 12 tomorrow... 12! How did that happen?? Just a quick update to my last post about surgery. Surgery is scheduled for November 10th and we will know more about the time of surgery the day before. Sadie will meet with physical therapy and the surgeon on November 9th and at that time we will confirm that we are talking about a recovery plan that mirrors the surgery in 2007. I can't imagine it being much different. Sadie is really looking forward to surgery, she has been having quite a bit of pain, some "normal" pain issues and some new issues. One new issue would be that occasionally she will "step wrong" and it will cause devastating pain (puts her on the ground type pain). This has only happened a few times, but that is a few more than is welcome. She also experienced this pain during non-weight bearing exercise in the pool. The therapist thinks it might be those small pieces of cartilage that are floating in her ankle moving and pressing against nerve endings. All and all, it's time for surgery and she knows it will help, which helps make it a bit easier.

Sadie continues Remicade, her last infusion was Friday - it was a one poke appointment!! She had her "birthday check up" today and checked out good there!!!

I know there is no "guest book" on this site, but please feel free to leave comments. Sadie will continue to read them and soon will be posting herself!