Ethan's lengthening appointment is set for January 10, 2012. It's seven months from now but I'm sure in a blink of an eye the day will be here. It's scary to think that seven months from now we will be in WPB and he will be in his first fixator. In all honesty, I try not to think about it. As a matter of fact, I refused to even acknowledge that his surgery is only months away. All we can do is pray about it and hope that Ethan stays healthy. We also pray that he is as resilient as our little friend Daniel Rigby who has had a fixator longer than anyone would want to. Abby has an appointment this month and she will find out if she is ready for lengthening. It would be great to have our local buddies with us during the four month stay and during our first round of lengthening.
You might be asking "How does it work?
The limb lengthening process works by gradually growing new bone and soft tissues (skin, muscle, nerves, blood vessels, etc). This new growth is called tissue regeneration. Bone and soft tissue regenerate when they are distracted (pulled apart) at a very slow rate of approximately 1 mm per day. If the rate of distraction is faster than this, bone may fail to form between the two ends of the bone that are being pulled apart and soft tissues, such as muscle, may experience contracture (get too tight) or nerves may become paralyzed. If the rate of distraction is too slow, premature consolidation may occur (the bone may consolidate too soon), preventing the lengthening device from further pulling it apart. There are many different lengthening devices used. The most common are external fixators, which are devices that attach to the bone by means of thin wires or thicker pins that have a screw threading at their attachment to the bone. There are two phases of lengthening until the bone is fully healed: the distraction phase and the consolidation phase. The distraction phase is the lengthening phase. After the desired length is obtained, the newly regenerated bone is still very weak because of lack of calcium within it. The hardening and calcification of this new bone is called the consolidation phase. The fixator needs to remain in place for both the distraction and consolidation phases. If the fixator were removed at the end of the distraction phase, the new bone would collapse and reshorten. Therefore, the external fixator needs to remain in place until the regenerated bone appears solid enough on the radiographs (x-rays). At that point, the device can be removed. Often, a cast is applied to temporarily protect the bone from breakage for an additional short time. The total time in the external fixator can be estimated to be approximately 1 month for each centimeter lengthened in children and 1.5 to 2 months or longer per centimeter in adults.
Ethan will be in a fixator for 8 months total. 4 months for lengthening and 4 months for calcification. That means that God willing and no major infections we will be home in time to celebrate his 4th Birthday. Then we will return to WPB in August to have the fixator remove. Ethan is looking to gain at least 4 cm in his first lengthening. Ethan’s current discrepancy is around 9 cm or around 4 inches. If we gain 8 cm with this surgery it will be a blessing even because then Ethan would only wear a shoe lift versus his prosthetic.
We had our PFFD play date last Saturday at Abby's house. The kids had a great time in the pool, running through the sprinklers and just sharing some good laughs. It's nice hanging out with the support group and bouncing ideas, concerns and even allowing our kids to be the majority. At the play date the parents discussed how the kids get stared and given awful looks by adults. We understand kids staring and asking questions but when adults gawk and stare at our child it’s just plane rude. During the winter months it’s easier to hide the prosthetic but during the hot summer months shorts is the only way to keep the kids cool. That’s when we notice more stares and people asking “What’s wrong with him?” in a tone of disgust. I personally, ignore it but not sure if Eddie will do the same.
You might be asking "How does it work?
The limb lengthening process works by gradually growing new bone and soft tissues (skin, muscle, nerves, blood vessels, etc). This new growth is called tissue regeneration. Bone and soft tissue regenerate when they are distracted (pulled apart) at a very slow rate of approximately 1 mm per day. If the rate of distraction is faster than this, bone may fail to form between the two ends of the bone that are being pulled apart and soft tissues, such as muscle, may experience contracture (get too tight) or nerves may become paralyzed. If the rate of distraction is too slow, premature consolidation may occur (the bone may consolidate too soon), preventing the lengthening device from further pulling it apart. There are many different lengthening devices used. The most common are external fixators, which are devices that attach to the bone by means of thin wires or thicker pins that have a screw threading at their attachment to the bone. There are two phases of lengthening until the bone is fully healed: the distraction phase and the consolidation phase. The distraction phase is the lengthening phase. After the desired length is obtained, the newly regenerated bone is still very weak because of lack of calcium within it. The hardening and calcification of this new bone is called the consolidation phase. The fixator needs to remain in place for both the distraction and consolidation phases. If the fixator were removed at the end of the distraction phase, the new bone would collapse and reshorten. Therefore, the external fixator needs to remain in place until the regenerated bone appears solid enough on the radiographs (x-rays). At that point, the device can be removed. Often, a cast is applied to temporarily protect the bone from breakage for an additional short time. The total time in the external fixator can be estimated to be approximately 1 month for each centimeter lengthened in children and 1.5 to 2 months or longer per centimeter in adults.
Ethan will be in a fixator for 8 months total. 4 months for lengthening and 4 months for calcification. That means that God willing and no major infections we will be home in time to celebrate his 4th Birthday. Then we will return to WPB in August to have the fixator remove. Ethan is looking to gain at least 4 cm in his first lengthening. Ethan’s current discrepancy is around 9 cm or around 4 inches. If we gain 8 cm with this surgery it will be a blessing even because then Ethan would only wear a shoe lift versus his prosthetic.
We had our PFFD play date last Saturday at Abby's house. The kids had a great time in the pool, running through the sprinklers and just sharing some good laughs. It's nice hanging out with the support group and bouncing ideas, concerns and even allowing our kids to be the majority. At the play date the parents discussed how the kids get stared and given awful looks by adults. We understand kids staring and asking questions but when adults gawk and stare at our child it’s just plane rude. During the winter months it’s easier to hide the prosthetic but during the hot summer months shorts is the only way to keep the kids cool. That’s when we notice more stares and people asking “What’s wrong with him?” in a tone of disgust. I personally, ignore it but not sure if Eddie will do the same.
Ethan is almost potty trained!!! He will so be moving up to the big kids class. He is really going to enjoy himself more because that’s where they have a computer. Eddie just ready to stop buying diapers and I can’t blame him.
We will be looking to do a couple fundraisers to help us out with the medical and housing expenses while we are in WPB. Please email us if you have any ideas or suggestions. Please continue to keep our kids in your prayers.
