Life in Davidland

Life in Davidland is moving forward. Yesterday we went and got his new orthotics. He is now a little over three weeks out from having the cast removed from his broken leg. He is still having some circulation issues in his lower legs if they are left to hang down too long but I am hoping with more activity and once he begins water physical therapy that soon this issue will be in our rear view mirror. It doesn't hurt that the weather is warmer too which helps his circulation immensely.

Since his cast removal, David has been doing several times daily, what they call "up downs." He sits in a chair with his walker in front of him and under his own power he pulls himself to a standing position, holds that position for 10-30 seconds and then sits back down. On his first day, he managed one, which was amazing due to the fact that his legs had held no weight for well over four months. Now he is up to five, three times a day. His legs are getting stronger every day. 

Saturday, the boys and I ran errands. While this sounds average enough, in our world this was verging on amazing. Because of the fragility of Davids bones and the need to protect his legs, along with the extreme effort involved on everyone's part, taking David places has been almost impossible. Now though, his legs are stronger and his ability to be moved around is much easier, so we decided to give him an outing. The last time we did this, he broke his leg the following day, so trust me, I was a little nervous over the whole thing. He did amazing though and we even stopped for a bite to eat and he was able to sit at a table and keep his feet propped up on the facing chair. It almost felt like we were getting back to some version of normal. 

When we got home, Z brought David in and put him on the floor while I carried in the groceries. In a matter of about 30 seconds, David had flipped up on his knees and was breaking all land speed records to get to the stairs. I stood in amazement with the ease in which those "delicate" legs propelled him. Without even hesitating he started up the first step. I held my breath as Z carefully stood behind him waiting for Davids next move. The first step came easy, but you could tell the second step took more effort. Then the third step. By this time his leg muscles were starting to tremble and you could see both the exhaustion and frustration in Davids eyes. When he realized that he had gone as far as his own strength would allow him to go, he began to cry. He so wanted to go up those stairs. Z carefully helped him to the floor and straightened his now tight and almost frozen muscles. It was a moment of both triumph and disappointment for all of us. It was beyond amazing to see David fighting to get his mobility and pre-surgery abilities back. The fact that he made it so far was awe inspiring. It was also disappointing to see the disappointment in Davids face as you could tell that he felt deflated at his self perceived failure to achieve his goal of all 13 steps. Both Z and I let him know that it was only a matter of time and he would conquer those stairs, but at the moment, the days frustration was all that mattered.

David crawling for the first time since surgery.

Since Saturday, he has made several more attempts to master the stairs. They are still a hill he has to climb but with his determination, there is no doubt in my mind that it is just a matter of time and he will be taking those stairs like a pro. 

As if this weekends stair adventure weren't exciting enough, David decided to top that on Monday. Instead of doing just his regular up-downs, he decided to wow his para and make his first attempt at walking. They recorded his efforts on his iPad at school and I nearly cried of happiness. Not only could you see the pride in Davids face at his first attempts at mobility, but his legs were beautifully straight. In the past, David has walked with his walker, but never has he been able to walk that either his knees didn't bow in or after his first surgery, his knees bowed out causing his feet to cross uncontrollably. Now though, his legs are perfectly straight which gives him so much more ease of mobility. It was obvious to me that all he needs now is to get muscle built up and strength in those legs and then there will be no stopping him. It was an amazing moment for all of us. 

Of course, along with the good there always has to be a speed bump. It is just the nature of the beast I guess. I touched on the fact in my last blog that some changes were being made within David's classroom. Change for a special needs kid is never easy and when you continually pile change on, which is what his life has been since Christmas, then there are bound to be some repercussions. Davids first week back at school went pretty well. At my "strong" insistence, they decided instead of yanking the rug out from under David and changing everything in his school life without a transition period, that they would give him three weeks and a gradual transition. Did this actually, happen? I have my doubts as David has gone from being excited to go to school, to suddenly being very quiet. He is excited until he hits the bus, but according to the bus driver, from the moment he gets on he goes into "ignore" mode and stays that way. I have also noticed that he tries to fight getting ready in the morning now, something he has never done. Then as of the other day, he has started having mini seizures again. Is this all a sign that he is dealing with too much change? My mothers intuition tells me yes, but I am taking him for blood work to get his med levels checked on Friday. If all checks out on that end, then I guess I am going to have to have another "conversation" with certain people in the district about what is in the best interest of the child vs. what vindictive personalities want. You would think that some would be wise enough to choose their battles and their opponents more carefully.

All of this being said, I have actually been able to take a calming breath every now and then of late. With spring forcing its way in, we have plans to open our pool this weekend and see if everything is still working on it. If all goes well, then hopefully these warm days will start taking their toll on the water and soon David will be able to begin his water therapy. There is no better therapy for post surgery kids like David and it is a therapy that he actually enjoys. It is my hope that after a month or so in the water David will be well on his way to stronger legs and by the time school starts he will be walking most places that he goes. The road has not been an easy one and often times the speed bumps have looked an awful lot like mountains, but if the end result is David walking, then every speed bump, every scary moment and every bad day will have been worth it all. Did I say "if"? I meant.....David will walk!

Back to School and Advocacy

First Day Back at School 4-8-14

To blog or not to blog.....that is the question. I guess the answer is....to blog. It has been a bit since my last David update, so I guess it is time.

David is doing very well. He got back to school last Tuesday and he seems to be progressing nicely. I did however, keep David home yesterday and today as we had another cold snap which dropped the temps into the high 20's to low 30's. He is currently having some circulation issues that seem to be exasperated by the cold, so I made the executive decision to keep him home and warm. Tomorrow, spring is suppose to show itself again, so at least he will get a couple of school days in before the Easter break.

Since last I blogged, David has ended up in the ER twice. Both times blessedly we were sent home within a couple of hours. The key to being sent home I have learned, is to come prepared to stay. Had I not come prepared to stay, you can better bet we would likely still be there. At any rate the first ER trip was the same day he stood for the first time (a week ago last Thursday). By afternoon his feet were turning purple and black if not elevated. Dr. K wanted him taken to the ER and after thorough examination and having his feet elevated for awhile, the color, warmth and strong pulses came back to them. Dr. K was relieved and said this was not uncommon after all he had been through, but that she wanted them checked to make sure the circulation would return. The next day we made a return trip to the ER, because he laid down for a nap and when he woke up, his knee on the broken leg had swollen to the size of a softball. I was just sure he had broken that leg again, however after a dozen or so x-rays to get a view around all the hardware, they said his knee and leg were fine and that they thought it was just him trying to stand that made it swell. They said to keep trying to stand and then to ice it, so that is now our daily routine.

I also learned a lesson that weekend into the following Monday. Thursday, at the meeting at school I was led to believe that all was right with the world as far as school and David were concerned. Friday evening I learned it was not and that Monday afternoon, I learned that although the school system and specifically the Special Education Dept. tell us parents that we are our child's biggest advocates and that we MUST advocate for them....it is pretty much just lip service. Decisions can be and are made about our kids without a parents consent and not always in the best interest of the child. If you are the parent of a special needs child and you are reading this, I encourage you to be on top of both teachers and the special ed department of your school. NO ONE knows your child better than you do and you should have a say and at the very least, prior notification of any changes being made to your child's schedule, personnel and/or educational goals. Also as a parent, it is up to us to not only sit in on IEP's but to have an agency advocate there (if possible) as a second set of eyes and ears. It is also up to us to make sure that what is written in the IEP is carried out. Finally, it is imperative that we know how much time the Sped teacher spends with our child, how much time the para is with him, how much socialization he gets and just how well all involved know the child. If you find any of these things lacking, then yes, you MUST advocate in anyway possible to make sure your voice is heard because you are the voice of your child. It isn't easy. It's not always pleasant and in fact it can be down right exhausting as there are those with the power to make a decision but will put so-called rules and regulations above the best interest of the child. Is it any wonder that so many choose to homeschool?

In time I will write more on the subject of advocating for your child, but for now I am learning just where my rights as David's parent will lead me. Many special needs parents do not have the luxury of their child coming home and telling them if something isn't right at school, so we have to be ever vigilant and know everyone that is around our child and everything that goes on when they are not with us. If this means having regular meetings with your child's team outside of IEP's or frequent visits to your child's classroom, then do it! You have to be informed. If you think that something isn't right or at the very least, not a good fit for your child....it is up to you to speak out. Change can not be made if the need to change is not fully recognized.

At any rate, David is back in school and slowly we are looking for our new normal. I think for the most part we are beyond him having much pain other than sore, weak muscles and going back full days has not exhausted him like I thought is might. He is loving the freedom of his world not being confined to just a few hundred square feet of moving space and when he went  back to school on Tuesday, the kids were so excited to see him and they all lined the hall to tell him so. I know that made him very happy.

So David's life is moving towards our goal of him walking. I know he wants to....probably even more than "we" want him to. He is so proud of himself each time he stands. The drive is definitely there. And as always, there will be speed bumps along the road and ever-so-often a dragon to slay, but in the end....I truly believe......David will walk!

The Day After

It feels as if we have been on a long and endless road. At times it felt as if our end game was just to survive and that the goal of David ever walking was just wishful thinking on my part. These last few months especially have taken such a toll on Davids body and my mental status that I think we were both to the place where we just wanted to find a normal and neither of us was very picky about what that normal might be.

Yesterday Dr. K took Davids cast off. I had no idea what to expect. It stunk....HORRIBLY! Either that staff is just a bunch of highly trained professionals that don't flinch at stinky patients or cast removal is just a stinky business. Either way....I was not not expecting the nasty smell that infiltrated the room after the cast came off. Thankfully, no cast meant he could finally have a real bath. Only his second one in almost four months. He was in heaven!!!

After the cast removal, Dr. K x-rayed the leg and I saw David flinch on the x-ray table. My heart kind of sank that he was still feeling pain. However, the doctor was very happy with what she saw on the film. Not only has Davids leg healed well, but he also has new bone growth which she was tickled pink over. So that was good news. Now what?

The plan is that David is to go back to school starting Monday. NO physical therapy for six weeks (precautionary so that his bones have that much longer to strengthen) but he is to spend time in his stander and do "sit stands" which are him sitting and then holding onto his walker and standing as many times as he can. She reminded me that he was just freshly out of a cast and that he had basically had no leg movement since Dec. 31st, so his legs are likely to be a bit atrophied, stiff and yes....sore. It will all take time. Sigh! PT will likely start with pool therapy and advance from there. They also went ahead and fitted him for orthotics while we were there and said that amazingly they would be ready in 7-10 days. Now that's a first. They are just simple foot, ankle, below the knee braces that will keep his foot and ankle supported in his stander and while he sits and stands. Until they are ready we have to use the ones that he has almost outgrown. In 6 weeks he will likely move onto a much more stable orthotic that goes to his hip for when the actual walking begins. Basically at this point Dr. K is good with David going at his own pace and doing what "he" is comfortable doing including getting on his knees and climbing the stairs if he so chooses. I am wondering if my nerves will survive the next 6 weeks?!

Driving Mr. David by myself was not as easy as I had anticipated. He has grown a lot since our last solo outing and transitioning him was not much fun for either of us, but we got it accomplished. Once again...we can do anything we put our minds to. Once home I put him on the floor and let him do what he wanted. He scooted everywhere and then went to the bottom of the stairs. I cringed! He sat there for a long time and then decided he would make the attempt. Fortunately for my mental status, his body is not ready for the whole on the knees stair climbing thing. He was not nearly as pleased that he was not climbing those stairs as I was!

I worried all night about his legs. I put them in the spika (barred orthic) at bed time, to keep him from pulling and twisting his legs in his sleep. To me his legs didn't lay right and his hips looked disjointed. I maybe slept 2 hours as I checked him every hour on the hour making sure his circulation was good and that he was comfortable. He always was until I would wake him up by moving his hips back into alignment. Neither of us had a great night last night.

This morning I continued to worry about his legs. His broken leg is still a bit swollen and the other leg looks like that of a malnourished war orphan. The thought of....all of this and David still not walking kept going through my head. Have I put him through two years of torture for nothing? I was definitely not feeling like Mother of the Year material.

As I drove to the school for the meeting about him coming back to school this morning, I really wanted to cry. I felt as if complete exhaustion was taking over my body and all I really wanted to do was to turn around, go home and  go back to bed. I was pretty much done and had decided that this whole adult, parent thing was just not working out for me anymore.

At the meeting we talked about him coming back and every thing the doctor had told me the day before. Everyone was excited about Davids return and I wondered if anyone could tell how gut punched I was feeling. David's school PT was there and she let me know that she would be coming by the house after the meeting to see David. I had mixed emotions as I wanted her opinion but I didn't want to hear bad news which is what I was afraid I was going to hear.

As the PT pulled into my driveway I braced myself. David lay on the floor with his hip looking twisted to me and one swollen leg and one spindly leg. Surely none of this was right and I wasn't sure I could stand to hear how wrong it really was. First she put me at ease assuring me that his leg might be swollen for up to six months due to the trauma of the surgery. The spindly leg was also to be expected as it had basically been unused for several months. I kind of already figured that. Once she had him in his wheelchair, properly seated, his hips and spine looked much better as he sat straight and tall. It was obvious that David was in some pain as he flinched each time we adjusted him but he continued fighting through it. Finally we put on the orthotics to make sure they would work for the next couple of weeks and weren't too terribly small and then we put on his shoes. Sitting in his wheelchair with his orthotics on, his knees and hips were beautifully aligned and his spine was straight as a string. I was starting to feel much better.

The PT wanted to see what David was capable of at this point. Again my heart sank, as I was so fearful that he would try to stand, not be able to and then refuse to try again. Poor kid, he is just so over being messed with and being disappointed. We pulled the walker in front of him and he immediately grabbed for it. Pulling himself forward though was painful and he almost gave up. We all feared that even if he were able to pull himself forward that he wouldn't be strong enough to stand. We were wrong. He stood. At first he needed a bit of support, but then he stood on his own. His feet were flat on the floor and his legs, knees and hips were straight. He was so proud. We were so excited and suddenly the fear of the last few months washed away and was replaced by blessed relief.

David stood for about 45 seconds on his own and then he had to rest. He tried again but the legs were a little too jelly like to hold him. It didn't matter. He had done it and I knew he would eventually do it again and again. These last two years were not in vain after all. 

Since standing this morning, I see a difference in David. It is like a light is glowing in him and even he realizes that hopefully soon, his life is going to change and his world is going to open up to amazing independence. He is really happy right now. Yes, we still have a long road ahead and we have circulation issues, a few little sores and a lot of strengthening to overcome and deal with, but today we both realized that he is getting there and after this morning.....I don't see him ever giving up. For the first time in a long time the words David will walk.....were not just words. They are his future!

Today is the Day!

Today is the day!!!!! I am cautiously excited as today David gets his cast off. I am actually very nervous just because, if past history has taught me nothing else.....it has taught me that I always end up tripping over optimism and falling flat on my face. Thus....the caution.

David's progress since his casting has been very good. We have still fought off a couple of stomach bugs as a family and Friday we go back into the neurologist to see about his seizures. He has only had a couple of break through seizures of late, but currently we can't use his VNS (vegus nerve stimulator) magnet as it causes him to throw up. Apparently it is set too high so we have to get it turned down a bit. Other than that....his seizures seem to be being better controlled.

My poor child is so over all of this surgery, sick, hospital stuff. Other than moving from his hospital bed in his make shift room to his wheelchair into the living room, he is pretty much confined to about 200 sq. feet of our house. He constantly points at the stairs as I know he wants to get back to his room, his toys and his life. I am hoping today may put us on that road. I am taking him myself today so that should be interesting too. Luckily he transitions himself pretty well from wheelchair to van and vice versa. Thank goodness for his amazing upper body strength.

From my stand point at Mothers Vantage......Davids hip surgery scars look amazing. His legs have been in either casts or stabilizers since Dec. 31st so his legs are wonderfully straight. Since the leg break and learning of his "soft" leg bones, he has been on a constant regimen of calcium, tums and a constant diet of calcium rich foods. Apparently this is working as Dr. K was very pleased with the healing of his break and the look of his bones when she put the cast on a couple of weeks ago. From the knee down Davids left leg is quite skinny and almost spindly looking. I am sure the right one looks as bad or worse. Because of all of this I have been giving him xtreme protein bars as mid afternoon snacks. To me they taste awful but his leg seems to be looking a bit better and I think he is putting on weight.

Dr. S was a bit worried about David losing upper body mobility and strength because of the surgery and his incapacition for a period of time. I don't believe that has happened at all. He uses his upper body constantly to adjust and move himself around. My only real concern is his spine. Where his spine had shown no further curvature in the last two years, I am afraid his prolonged stay in casts, stabilizers and bed may have caused some more curving in the spine. I know that is a surgery that will not be an "if" but a "when" and after all of this.....I cringe. That being said, I refuse to borrow trouble or worry about tomorrow when today gives me plenty to contemplate.

To say that David has been a trouper through all of this is an understatement. He still laughs, smiles and seems to enjoy life (for the most part) regardless of the situation. He has become much more leery of needles, nurses and hospitals as he knows it means being poked, prodded and usually a certain amount of pain. Through it all though, we have only had one real melt down and that was when they changed his leg splint before the bone had had a chance to heal. I never want to see my child hurt like that again. Other than that though, I have been far more disagreeable through all of this than he has. He is just amazing.

Even though the cast comes off today, I have no plans to get rid of the hospital bed just yet and I have no illusions that he will just miraculously stand up and take off on his walker. His legs are blessedly straight but I have no doubt the muscles have atrophied a great deal over the last few months. I plan on getting both an orthotic and a physical therapy plan in place from Dr. K today. Tomorrow will be phone calls and appointments being made (provided the entire medical community hasn't black balled me), Friday will be the neurologist and then God willing and the creek don't rise...(yeah you can thank my mother for that one) Monday David will start back to school. I know he is ready...I think I'm ready......lets just hope the school is ready!

Change is coming. I can feel it and I am not just talking about the weather. We have been on a pretty precarious journey these last few months and hopefully we are heading into a new chapter where David's independence can soar, because at the end of the day, the goal is....David walks!