We saw Matthew's P/T yesterday, not for an appointment, but chatted with her afterschool (she works one day a week at Matthew's kindergarten). We really hadn't talked since Matthew had his last physio appointment in March.
She took a look at his new AFO and she was impressed with it. It is not that much different then his old one, but different enough. The joint seems higher then the old one and the strapping is crisscrossed around his ankle. She immediately noticed that with the new strapping, it could be tightened to get his foot above neutral. I hadn't thought if it but it does work. Brilliant! She suggested that in the afternoon, when he is looser, we tighten it. And if we find the strap slipping, put some velcro on the bottom. Great ideas!
She was also impressed with how he was walking so soon after casting. I will have to get another video and post it. She said that usually for every week in a cast, it takes 1.5 weeks to get to normal walking. She also feels that he will not take that long. Notice the hinge on this AFO is cut higher then his last one here.
One thing she said that worried me was night bracing. She asked me if he was wearing a night brace. I told her that Dr. Dobbs had decided that he didn't need it right now but that if he was getting really tight in the mornings, we could get one. She was worried that after doing all we did and traveling so far that he could loose what we have gained. It is my worry too, but Dr Dobbs does not share that concern so I will try to defer to him and see how it goes.
She gave me another stretch to work on at home. She suggested that while in his AFO, I get him to straighten his knee and as he can tolerate, add dorsiflexion. That way we are stretching the long muscle behind the knee which is what has been missing from Matthew's treatment for the past 6 yrs.
I have to admit, I have only been stretching him twice a day. I was told 2-3 times a day. I need to add a third time in. I think the stretch with the AFO will be the one to add.
We start back with physio next Wednesday. She told me to try and prep him for it, he will not be happy as she feels Matthew associates her with pain. He probably does but this is one train we can not miss.
Ahhhhh. Back from a great long weekend of camping. Nothing better for our family then camping. Pure family time. Even though we come back tired and there is laundry to do and groceries to buy, we always come back refreshed.
This trip had an added bonus, some how set up by chance. Two campsites over were a couple who we knew yrs ago. They have three children around the same age as well. And the campsite between us was his aunt and uncle and their three older kids, the youngest, a 12 yr old boy, who was amazing with kids and loved to play with our boys.
We weren't sure until he tried, but Matthew was able to bike (with training wheels). We thought it had to be good for strength building on his foot. Using the muscles without the same weight on it. He loved the freedom. The boys biked all over that campground together.
So with lots of kids to play with, sunshine and bikes, the boys had a great time.
And now, it feels like we are finally back home. Now to tackle the chores... besides laundry and cleaning.
I need to set up twice a week p/t for Matthew.
Going to get hubby and I back on the South Beach Diet. Eating at RMH for three weeks added a few extra pounds that I would like to be rid of again.
Also going to get out in the yard and start working there. I need to cut down the old Clematis vines, add the new twinkle lighting to the lattice. Plant strawberries and flowers and maybe if there is time, make that bed I keep talking about and plant some vegetables.
It feels so good to be back in the swing of things.
Packing up today for an early morning flight to St. Louis. Not sure if I will get a chance to update while I am gone although we are staying at Haven House which has a computer room. Will have to see.
Matthew's appointment is for 2 pm on Monday. Cast removal, foot manipulation and final thoughts from Dr Dobbs, brace (AFO) fitting, and finally a trip to p/t. Then, we may go and visit his buddy who is having his tenotomy surgery that morning.
The most exciting thing that we get to pack is Matthew's left shoe.
I think the stress of it all is finally hitting Matthew. He has been a bear to take to school all week. He is back to sobbing, hating school, not wanting to go. His teacher even had to pull him sobbing off of me the past two days.
I know what some would say. If it is that bad, let him skip a few days. Problem is, this is a kid who did this almost all last year in preschool and for the beginning of this year. If he knows that acting this way gets him out of school, it will snowball.
So I drag him in, his teacher drags him off of me and I leave. Not fun. Good news is he settles within minutes of being there.
Hoping that when we return next week, he can settle down into a routine again for the last month and a half of school.
We have our tickets in hand and our accommodations booked. Ready to go back to St Louis on Sunday. My husband asked me how I was feeling to be going back so soon after our long stay. I had to think for a minute.
My first reaction is, crap, we are off again. But after thinking it through, this is a good one. This trip is what made the whole process worthwhile. We go to have his final cast removed, his foot checked out, his AFO fitted and a trip to p/t for instructions on what we need to do and how often. We are through the hardest part. 7 weeks of casting and we are onto summer! Yay!
And when we get back, I am planning a camping trip for the US long weekend. And, yes, I will be pulling Matthew out of school for it. Even though he has missed almost 4 weeks of school, a three day camping trip is just what this family needs. Some family time doing what we all love to do.
The future is looking fantastic and I for one can not wait!
Not going to go into all the details but I wanted to share the highlights of this year's best Mother's Day.
Highlight #1 - On Saturday afternoon, the boys were playing outside. They came in and told me not to look. They bustled around and finally I was instructed to open my eyes. There they were, grinning ear to ear, holding a sofa cushion between them. In the center of the cushion was the treasure, a heart shaped rock, they had found and wanted desperately for me to have for Mother's Day but could not wait another minute to present it to me. Awwwwwww!
Highlight #2 - the boys were so excited to celebrate Mother's Day with me that they had a hard time falling asleep and woke up early so they could start the celebration. Awwwwww!
Highlight #3 - After letting me sleep a bit and bringing me breakfast in bed they helped make, I was to open my gifts. Daddy had taken them to the dollarstore and let them choose 5 items each for Mommy. What ever they felt was a wonderful gift for Mommy. Oh, they had a great time at the store and were so excited for me to look at and inspect each item. Among the treasures were a garden angel, sparkly hair elastics, a pizza cutter (so I can cut homemade pizza on movie night faster) and a green toilet bowl brush (so I can clean the bathrooms easier).
Ok, so a toilet bowl brush may not be most mom's top choice of gifts, but the fact that the boys thought carefully and picked out each item was so special to me. They could have picked toys so that eventually they would have them to play with, but they didn't. They thought of me as only a 6 and 5 yr old can do. And that is why it was the best Mother's Day ever.
Matthew went back to school yesterday for the first time in almost 4 weeks. He was like a celebrity with all his buddies crowding around checking out his latest cast and saying hi. He had a big grin on his face.
Funny thing, so did Ryan. I think he enjoyed watching Matthew back with his friends as much as Matthew did. For Ryan, it meant that life was back in order. The end of what I am sure was chaos for him.
After school, the boys played on the hill outside the school. It was cool out and all the other kids had gone home. I asked if they wanted to go and have lunch. Both of them said no. They were having the best time finding bad guys, chasing them, hiding from them...playing.
And I had the best time watching the joy on their faces. What else could a mom ask for.
We flew home yesterday and boy is it good to be home! Will blog later when I find some time, right now I am trying to book Matthew's appointment in two weeks for cast removal, AFO fitting and p/t. Then I need to book flights and accommodation.
The trip home was made better by the many 'angels' who stopped their busy lives to help out a lonely and overwhelmed mom with a little boy in a cast who's tummy was not feeling too well.
Every day I am in awe of the wonderful, friendly people out in the world willing to help.
I can't believe we got a Christmas present in May.
Matthew was oked for surgery, seems it is just allergies. He has no fever or cough. They took him in and I went to wait in the OR waiting room. About 15 min into it I got a phonecall. THe nurse said Dr Dobbs wanted to speak with me. I thought, oh no. But it was good news. He said that Matthew's dorsiflexion was greater then he could have expected for a week in a cast and he recommended no surgery.
My jaw just about hit the floor.
Dr Dobbs said he would recast him in the OR and then send him to recovery.
After recovery, we got our new appointment for cast removal, brace fitting and p/t for May 18.
Who knew that foot wrapped up in plaster and blue fiberglass held such a wonderful Christmas present.
The past few days Matthew and I have had scratchy throats and been sneezing. I thought allergies and have been giving allergy medicine in the evenings. This morning Matthew woke up with an itchy throat, sneezing and popping ears despite the 24 hour allergy medicine.
Crossing my fingers it is not a cold. Not sure what that would mean for surgery tomorrow. If the surgery doesn't happen tomorrow, the doctor does not have OR time for weeks again.
I am going to keep it a low key day, maybe try and have him lay down this afternoon... maybe a bit of Gravol to see if he can sleep.
Today I am not able to open my blog from these computers. A window keeps popping up saying it is blocked due to drugs and alcohol content. I am guessing because I used the 'w' word in my last post. ARRRGGHHHHHH! Luckily I was able to load blogger and then sign in. I can see my dashboard and create a new post, but not see my blog. Hoping by adding a new post I can see my blog.
So this is my test. Crossing my fingers, I am already blocked from my facebook and my yahoo groups time out when I try to log in most days.
3 more sleeps!
I was able to go in through my dashboard and edit the naughty 'w' word out of my last post and am able to see my blog again. How silly...
I knew this would come. Matthew is now scared of his surgery on Monday. HE holds it together most days well, but usually has a few bouts of tears every evening. He knows we are close to coming home, but that by getting closer to coming home, he is closer to surgery. The last one was so painful and has left him with some rather terrible memories. Hard to convince him otherwise. Besides, I can't lie to him, it will hurt.
As for me, I am ready to go home too. I am getting rather lonely. Tonight at dinner it was all new faces as so many we have gotten to know have gone home. I am craving adult conversation, adult tv shows and a glass of red 'w'. If I know my dear husband, all three will be waiting when we get home in 4 sleeps.
I am a SAHM with two boys close in age. My oldest was born with an atypical neuromuscular left clubfoot and keeps us very busy with appointments.
It seems that in our family, everything we have done has been a struggle, but in the end, worth every difficult step. This blog is about those steps in our journey.