Broken Braces

I want to write this down to remember it.

The Monday before Mardi Gras (President’s Day), Jackson was home with Jon, since they were both off that day and I had to work. Jon called me that morning to tell me that one of the screws on the left hip part of Jackson’s brace was stripped and the other was loose! Keep in mind that his left hip is the “weak” one, it’s the one we have always struggled with (in fact, it’s the side the doctors believe was affected if he did have a stoke in utero) and it is also the hip that we had the osteotomy on. At any rate, since Jon is the technical one and I am the scheduler one, Jon needed the numbers to call Seattle and our brace guy, Nick (in New Orleans). I gave him the numbers and he called. Seattle Children’s was closed for President’s Day and New Orleans couldn’t order the parts (since they didn’t make the braces and insurance wouldn’t pay them for the replacement parts). On Tuesday, I was busy with Jackson and running errands, so I didn’t get a chance to call back to Seattle until Wednesday morning. Dr. Song’s nurse at Seattle Children’s (Laura) is an awesome person and immediately returned my call when she heard my voicemail. She had Peter in orthotics call us back, he started asking me questions and I had to get Jon on the call too, see he is the technical one! Ha! Peter said he needed us to send him pictures, which I did on Thursday. Peter called on Friday to tell me the brace parts were on the way. They arrived here on Monday and we called Nick to set up an appointment for tomorrow (Wednesday).

Fast forward to today: Jackson went to school and I told them that after Gayla (our PT) and I looked at them yesterday, we thought he would be fine today, but that the last screw was on it’s last leg. I told the aid this morning when I dropped him off that he could continue normal activity, but if the brace broke to give me a call. Sure enough at 10:30 am, I got the call! I talked to Peter again this afternoon and he said that Jackson was “moving more than he was supposed to be able to” and that is probably what happened!

Seriously!? I am so proud of him and thankful we have a brace guy close by! I want to take him and that broken brace to every doctor who told me what he wasn’t going to do. I want them to know that hard work and prayer is all it takes. I don’t want them to tell one more mom that their child will NEVER get out of a crib. I want them to know that AMC has never stopped this kid and it doesn’t have to stop another family! But for today, I take this as one victory on a journey of millions of victories!

 

A Day in the Life

Let me preface this post by saying a few things:

-I don’t want to sound whiny or ungrateful, but in the words of a good friend, who has a child with AMC, “it is what it is.”

-I want to glorify God in all I do; how I live, raise our son, be a wife to my Hubby, serve in our local church and I make choices, I ask that you don’t judge them, but try to understand them as best you can.

-I am blessed to have a Hubby who does help as much as is possible for him, since he works 40+ hours a week.

- I am well aware that there are people who have way more to deal with than we do. I know a very close friend of ours who has a son who is medically fragile and they have WAY more than us to contend with.

-And finally, I want to make it VERY CLEAR, no matter what you may or may not read into what I am about to write, I WOULDN’T trade this life for in anything in this world!

So, here we go!

I have felt a pressing in my heart to write about what a “typical” day looks like for us, raising a child with special needs, more specifically raising a child with Arthrogryposis Multiplex Cogenita. Keep in mind that everyone with this diagnosis is not the same, so this is how our school/week days look like with J.

5:30/5:45 am: I wake up, start the coffee, have “quiet time” and take a shower.

6:15 am: Jon wakes up. He makes the coffee. Typically, I am in overdrive mode to get my hair dry and make up on. As well as start gathering things to make breakfast and lunch for J to take to school.

6:20 am: Jon and I go and sit on our back porch, drink our coffee and talk.

6:30 am: We wake J up and Jon takes him to the potty. Jon hops in the shower and I get J dressed for school. Keep in mind, J can not do most self-help skills independently yet, so getting him dressed is a Physical and Occupational Therapy session in itself. Typically, getting dressed involves: stretching his legs and arms, since he’s been in braces all night. Getting his pants on to his knees and then putting his shoes on, assisting him in velcroing them. Then I stand him up and assist him in pulling up his pants. Next, we stand in the walker and I assist him in putting on his shirt.  Still standing in the walker, I brush his hair (some mornings he helps, some he doesn’t).

6:45/6:50 am: We get his walker situated on the tile (by this point Jon is out of the shower and getting dressed, so he can spend the next 30 minutes watching J stand) and then we walk with  assistance (basically J in the walker and me crawling backwards on the floor to help him from the front of the walker) all the way from his room to the living room. We don’t have a overly huge house, so for someone who is not using a walker and learning to walk, it takes about 1-2 minutes depending on pace. However, since this is PT for J, it takes about 10-15 minutes depending on his cooperation level that morning!

7 am: Jon sits on the sofa while J stands in his walker watching TV. TV is a big treat in our house for J, so we let him do it while he stands. Meanwhile, I am preparing breakfast and lunches for the day. I am also making sure that all of J’s things are in his booksack and everything will be ready for us to leave.

7:30/7:35 am: Jon takes Jackson out of his walker, (we are working up to an hour, but are at 30 minutes for now) unlocks his braces and allows him to either floor sit or lay down. Jon leaves for work and J finishes his show, while I tend to last minute details of finishing up getting dressed or packing things up and putting them in the car.

7:40/7:45 am: I take J into the bathroom, help him stand on a stool and brush his teeth, I make sure they are good and clean and we load in the car to leave for school. (keep in mind, that since I have already loaded his walkers for school, I have to then carry him to the car and put him in his car seat.

8:00/8:10 am: We arrive at school and I have to unload the walkers and his lunch and booksack, as the aide/carpool teachers unload him. They then place him in the walker and he is off to school! I leave school (unless it’s Friday–on Fridays, I stay to meet with his therapists) and head to work.

2/3:00 pm: I leave work and head back to school to get J. I load the walkers back up and the carpool teachers load him up.Then it’s off to whatever therapy we have that day, except on Friday, if he’s had a good week, it’s YOGURT!!!!

3:30 – 5:00 pm: J is in whatever therapy we have that day and I am there supporting him, cheering him on, offering ideas and taking in all they are doing, so that I can repeat it at home. We usually both leave therapy exhausted, but swim days tend to wear us both down the most – on those days, I have to help him change twice at therapy—-it’s a lot less easy in the tiny rooms for him to do a whole lot himself.

5:15-5:45 pm: We arrive home and I make J play independently in his playroom for about 30 minutes to an hour (it is important to me that we both have some decompression time). During this time, I usually start on whatever chore I need to complete that day, load or unload the dishwasher, load or unload the dryer and start dinner.

5:45 – 6:15 pm: During this time, we work on “afterschooling” basically for us, it is enrichment and building on skills, like writing. Also, Jon usually arrives home from work around this time.

6:15/6:30 pm: We finish up “afterschooling” and I let J help me get the rest of dinner ready. With his new learning tower, he can help me plate the food. We all sit down as a family to eat—-it is one of the MOST important things to me. During dinner, Jon sits by J and helps him to stick his food or get it to his mouth. Depending on what we have, he needs lots or little to no assistance.

7 pm: Usually, J will help my rinse dishes (in his learning tower) and then him and Jon will go to the playroom to play. I finish picking up dinner and getting things together for the next day (lunches, breakfast, school papers, etc.)

7:30 – 8:30 pm: This is either the start of bath time or the star to stretching, J has super sensitive skin, so we bathe him every other day. On bath days, it means Jon gets his bath ready, while I help him get undressed, this involves taking off his long leg braces also. Then, one of us stays in the bathroom and helps him bathe. If it is not a bath day, we take assist in taking off his clothes and braces and start stretching and doing massages. If it is bath day, we do the same after his bath. We stretch his legs and his arms, very well, as he has been in the leg braces all day and his arms have been doing a lot of work. Once we are done stretching, we assist Jackson in putting on his pajamas and put his leg braces back on and put on either his elbow or hand braces (we alternate nights). Afterwards, we read our bible story, say our prayers and since he is in braces, we brush his teeth for him and put him in bed!

8:30 pm: I usually try to get the load of laundry finished and Jon and I try to have some time together and talk about our day. Some nights we just lay on the couch and watch TV. We usually just relax and try to get ready for the next day.

9:30/10:30 pm: We go to bed and try to get some sleep! If we are lucky, we make it thru the entire night, but most nights we (and by we, I mean usually Jon!) are up 1-3 times because J’s braces are bothering him, he needs water or he’s uncomfortable.

That’s our day!

I am not asking for pity or help, I just wanted to put out there, what it’s like and that when I say, “I’m tired”, it’s not just small talk. Thanks for checking in on us!

 

Happy Birthday to Our Miracle – 5 years

Today, our beautiful miracle turns 5, today is a day some told us we would never get to; others told us that if we made it here, he wouldn’t be out of a crib.

But this is not a story about them, it’s a story, a testimony of how amazing a God we serve, how blessings come when you least expect them and how much 5 years can change your life.

You see, our Jackson, our miracle was not supposed to live, he was not supposed to sit up, he was definitely not supposed to feed himself, color, go into a magnet program and he dang sure wasn’t supposed to walk! A lot of doctor told us what he would NEVER do, but you don’t tell a hard headed, Christian, Southern girl what her child won’t do, you just give her ammo! There were a lot of people who prayed for us, who put us on their prayer list and who still pray for us every day; some of them we have never met. And through these last five years, we have become closer to our Savior and found an amazing church “home” all because of one little miracle.

I can’t begin to tell you how many blessings have touched our lives through Jackson and his journey. We meet people every day that he touches. Every one who meets him loves him and everyone who he touches spoils him rotten. Women at our therapy center give him chocolate on a regular basis, they buy him little gifts and treat him like royalty. People Jon and I haven’t talked to in years find us on Facebook, because they have heard of Jackson. I have stepped out of my comfort zone on many occasions to share our story, all because of one little boy! I have done things I never dreamed of and been places I have always wanted to see. I am not from a big family, I have one now in our AMC family. I talk to these people who “get it” on a daily basis. They share my hopes, my dreams and on the roughest days, my struggles.  The day Jackson was diagnosed in utero, I became part of something bigger than I ever thought possible, the day he was born, our lives changed FOREVER, way more than just having a baby will change you. Jackson made our marriage stronger, our family bigger (a lot bigger), our faith unshakable and our story a beautiful masterpiece.

To each and every one of you, we will never know why our lives intertwined this side of Eternity, but it’s all part of His PERFECT plan and we are just blessed to live it, all for HIS GLORY!

A Lot of Catching Up to Do

It’s been a long time since I’ve blogged, we went to Seattle and had surgery on Jackson’s legs on November 14, 2011. They ended up doing a release on both hips and both knees and an osteotomy on both knees and his left hip. In the weeks leading up to surgery and during the surgery,  many were praying over us and for us. I have to tell you those prayers were definately felt…this was the first time I have ever felt such an overwhelming peace about sending my kid back for a procedure! The whole morning we felt God’s hands on us…from the fact that the OR nurse’s name was Deborah (Jon’s mom’s name – she passed away 3 years ago-and we’ve always felt that she guides us thru this journey in so many ways) to the peace we had about sending him back—I didn’t even cry, when I left the OR! We spent 3 days in the hospital and 2 weeks in Seattle. By the 3rd day after surgery, Jackson was back to ROLLING—even though we were told, he probably wouldn’t be able to! Praise God!

We have been home since Thanksgiving Day and Jackson continues to prove that he’s one tough cookie! He has been able to bear weight on his feet for a while now and 2 weeks ago, he began “walking” with me supporting his butt! We are doing great and are ready to see what 2012 holds!

Tomorrow we leave for Seattle and will get the casts taken off on Tuesday at 12:40 pm Pacific time—Jackson is a little nervous, so please pray for courage! Can’t wait to see those beautiful legs and what he does to shock the medical team next! We have been asked twice by the PA, if we are sure he has AMC—-that we are sure of, we are just not sure of the “form”—-no matter what, we still serve an AWESOME GOD, who is STILL CAPABLE OF MIRACLES! We are blessed we were choosen to be his parents! Until next time…..

Seattle

Please bear with me, I’m writing this on my phone! Today was an amazing God filled day, prayers were definitely felt and answered today! We saw 8 professionals at Seattle Children’s. The third doctor was saw was Dr. Judith Hall, if you don’t know, she’s an AMC guru, she’s the one who literally wrote the book on AMC! She had no idea that we were there today to specifically see Dr. Song about Jackson’s lowers, and after talking with her about genetics, the first words out of her mouth were, “so what are y’all going to do about his legs?”! I told her we had just seen Dr. Song & discussed doing a soft tissue release on his knees & hips &a rotational osteotomy on his knees! Her response “good & are you going to do it here?” I told her yes & she responded “good”!

Dr. Song believes and Dr. Hall agrees that if we do this surgery, Jackson will be a “home ambulator” and “possibly a community ambulator”! We are believing for community ambulation! So, we return home tomorrow & start talking as a team with our home providers & decide on time frames and next steps!

I know all the prayers so many prayed for us and/or over us worked, God gave Dr. Hall those words! Thanks again!

XO

His Timing is ALWAYS PERFECT!

So, I just have to put this down for us to remember on the really tough days….

When Jackson was born in February 2007, we were given the name of a family in BR that had a child with Arthogryposis. When we brought him home at 8 days old, I called this family and spoke with the father. It was not a very supportive conversation, but none the less, he gave me the name “Dr. Judith Hall” at Seattle Children’s Hospital and the number there. I wrote it all down in a little note pad. About a week before we left for Conference in KC, I found that little note pad, which had all our information (who Jon was to call after the baby was born, how much I pumped, how much he ate, etc.—so, I’m a little OCD) and that information! I thought in my head “one day, maybe we will go to Seattle”. Over the past 4 years since Jackson was born, we have “toyed” with the idea of going to Seattle, but it never quite worked out or we didn’t think we could gain new knowledge by going there.

One such instance, was when we met Dr. Judith Hall at the AMC Conference in Philly. She took down all our genetic history and then looked at us and Jackson and said “He puzzles me!” At that point we decided we were receiving great treatment here and that if the one and only Dr. Hall couldn’t explain our miracle, then why put in the time and resources to travel over 2000 miles!?

Fast forward to the Conference in KC just earlier this month. We met Dr. Kit Song from Seattle Children’s. Sitting on the BOD of AMCSI, I don’t get to sit in on many sessions, but I was able to sit in on this one. I took lots of notes (see an OCD pattern?) and then when Dr. Song was done speaking, I texted Jon to bring me Jackson. We took Jackson up front and Dr. Song graciously gave him a once over. He told us that he wasn’t sure if Jackson had knee caps and if he did, he wasn’t sure if they were in location. Dr. Song also added that he thought we needed to do a soft tissue release on Jackson’s knees and/or hips.

When we arrived home from KC about 2 weeks ago, I called Seattle again. I hadn’t heard back from them on that Thursday, so I called again. Sharon, the intake person answered the phone and told me they needed ALL of our medical records and a referral from our pediatrician and that they had openings for the August 31st clinic (unheard of!). I ran around like a crazy person and got all the information and sent it to her. I called on Friday to follow up and she told me they had everything they needed to schedule us and they still had openings on for the August 31st clinic! We scheduled and I hung up the phone and freaked out! How in the world were we going to afford to fly to Seattle!? I contacted Angel Flights, but they only fly 3oo miles, so that was out. In that moment, I just said God, if this is your plan, then you’ve got to make this work. Well, don’t you know, HE DID!!! Someone blessed us with plane tickets on Friday NIGHT!!!

We leave in a little over a month and we are believing that this was all His timing and that we will come away from Seattle with a lot of answers! We are also believing that this will be our answer to walking! Please join us as we pray over the next few weeks and BELIEVE for our bumblebee!

We are Moving….

No not to a new house again! But we are moving our blog to WordPress….one huge reason is that I want to be able to update from my phone, a feature not easily available on Blogger. Please visit us at www.bumblebeesdofly.wordpress.com

Love!