In November, Gracie had a plate placed in her tibia to help straighten her leg as she grows. Although this was unplanned, it was not unexpected because I could see it was needed without any x-rays. Gracie has recovered from that surgery very nicely. Thank goodness because this was one of the emotionally hardest surgeries on me. She was very aggressive after surgery and while healing this time around. Not her normal self and it took a toll on all of us. She still has aches and pains when she grows or when its really cold/rainy or snowy out...but all in all, she's doing amazing. She is running around, climbing and back to her old self! We are currently in the process of applying for a grant to cover the costs of therapy, and once that is complete (and hopefully approved), she will begin some pretty intense therapy. This therapy is very important as it will hopefully alleviate the need for a major surgery this summer when they take her plate out. The goal this summer is to only have the plate removed, and not any other surgical treatment done. IF therapy does not work, then we will have the plate removed from her tibia, and at the same time, they will do an osteotomy, manually turn her tibia the direction it should be, and screw/plate it back together. This should help her walk straight instead of turning her foot in. It is a few days in the hospital, and most likely a week in Baltimore. This surgery is pretty invasive, so they usually combine it along with the lengthening surgery. Gracie's length however is holding pretty steady, and it looks like that surgery may be a couple years out. She will have to have this procedure done either way, but being able to hold off until it can be combined is preferred. We are praying therapy is a huge success and this summer is just a quick trip out for the plate removal.
It's been pretty crazy at our house lately. We have been sick on and off for a couple months. It seems as soon as one gets better, another gets sick and round and round we go. This is NOT the kind of family sharing I like. I have literally sanitized my house more then once and now just waiting for all of us to build up enough immunity to not get it anymore. LOL. Landry is playing basketball, and man is he good! It is so cool to sit and hear other parents oooh and ahhh over his talent. Seriously, every Saturday someone is saying he is one to watch out for, that this kid can play. I'm a very proud mama that's for sure! You can definitely tell this boy has been in a gym since he was a newborn. We have signed him up for flag football this spring, and he is so super excited he can hardly wait. I love watching him play sports. It reminds me of watching and cheering for my brother when I was younger and it is just so much fun. We are hoping to get Gracie signed up for something soon. She really wants to play soccer. I have been super hesitant because I'm worried about someone kicking her leg and her getting hurt. The more I think about it though, the more I remember that we did not choose this journey for her to be limited. We chose it for her to have opportunities to do whatever she wants, and we refuse to put her through all of this and then say no to something that she should be able to do....so I'm going to push myself outside my comfort zone and I think we're going to get her signed up soon. I'm really trying to get her interested in swimming....that would be perfect for her leg and for future strength/recovery.
Recently I was asked what Gracie's long term care plan is, and why we keep fundraising. It got me thinking that many of you may be wondering the same thing. So I wanted to take a quick moment and give a tentative layout to Gracie's care plan. This of course will change as she grows and as the unexpected comes up.
*Gracie will have 1-2 leg lengthening procedures. To my understanding this is a process that will last approx. 9-12 months (depending on how many inches we are trying to gain, complications, etc). She will most likely be in an external fixator (similar to super ankle surgery) for one, if not both lengthenings. This will require either 3 months in Baltimore, or traveling back to Baltimore every 2 weeks for clinic (per lengthening). It will also require intensive land and water therapy. At this time, it is estimated that her first lengthening will be in 2-3 years. Each lengthening includes 2-3 surgeries, more if complications.
*If therapy does not work, Gracie will need the surgery we discussed above now, instead of in combination with the first lengthening.
*There will also be sporadic plates placed in her tibia and/or femur to help direct the growth of her leg in the correct manner. These will be a necessity throughout her growing years.
Basically, she will have surgeries on and off throughout her growing years. They won't all be at one time, and we will have space in between them, hopefully more then we've had lately, but the best estimation I can get is that they will be needed. We do not know how many or exact times on them with exception to this summer. As an adult Gracie MAY require maintenance surgery depending on how she rehabs and how her body bears the trauma of the surgeries. So....we will probably always be fundraising to some extent. :-) And, we will probably always need your prayers and well wishes too!
Thank you so much for going on this journey with us, for listening to my rants and vents on this blog, and for your support. Emotionally, spiritually and financially. There is no way to describe how the support we receive has helped us. From the Fibular Hemimelia (FH) support group on facebook, to friends, family, churches, strangers and more....you all help us more then you know!
Prayer Requests:
~Please be praying for a couple FH families. One has a little girl under 2 years old who is having her first surgery (super ankle) this morning and will be wearing the external fixator Gracie had. Prayers that surgery/recovery and rehab all go smoothly would be appreciated. Also for mom and dad. This little girl is a twin and has a brother who will need them as well. It's such a stressful time and comes with a roller coaster of emotions. Prayers for strength, peace, and supernatural energy for them is also appreciated. The other FH family has a son (about Gracie's age) recovering from his first lengthening surgery. As I understand it, the lengthening is going great, but physical therapy has been a challenge and this little man is needing some prayer in that area. Prayers that he would cooperate at therapy, that he would not be scared or in pain, and would be able to communicate this to his parents when he is. Also, prayers for these parents. It is so easy to place blame on yourself as you go thru this. Blame that they aren't rehabbing well, blame that they are hurting, that there's an infection, etc.... Combine that with a lack of sleep and stress and its such a challenge to come out the other end feeling like you can do anything right. These amazing parents are in the middle of this process and need these prayers.
~Prayers that God would guide our family in some desires we have laid before Him. Prayers that Gracie would continue to heal well, and that therapy would be helpful. Prayers that we are approved for the grant to help with the costs of her therapy. Prayers for health over our entire family/home!
When things get overwhelming in life, it is good to know God is with us. It is so comforting to know we are not alone. We are blessed to have our faith and relationship with God. I know that not everyone has the same faith, and I appreciate that I can share my beliefs here, along with Gracie's journey, knowing that those who believe pray, and those who don't, still read, still care. They think of us, and wish us well. We truly appreciate it all!
For us, being able to place our hope in the Lord has carried us in ways we can not even begin to explain. It is my sincere prayer for you that you find a relationship with God. That you come even closer to Him then you may already be, and that you know, with your whole heart that He is your helper. That He is your shield. God Bless!
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| Home for Christmas! Kids loved time with Grandma and Grandpa. |
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| While we were back in AZ, Gracie had a follow up on her heart. (Surgery in July 2013). We got the all clear for checkups every 2 years now!! She's doing great! |
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| This girl loves her Uncles. This is Uncle Drew! |
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| Landry enjoying some of the advantages that come with a tall Uncle! |
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| A little scared, but finally got up there herself! |
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| Gracie finally transitioned to her big girl bed!!! It's a work in progress but she's doing better then I expected! |
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| Coach and his mini me. Love this pic of my two boys! |
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| Perfect shot of his age's 3 pointer! LOVE watching him play! |
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| Gracie's latest x-rays. Difference is probably about an inch, hips are off, but the plate is doing its job. As soon as that leg is straight we will remove the plate. (Until the next growth spurt sends it growing out again)! :-) |
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