Alyssa had a tough year after her 5th birthday. Towards the end of July, she went in for a revision of her rods, because one rod had become dislodged. The surgery and recovery went well. Then in August she was back in for her scheduled rod lengthening. Surgery went well, but Alyssa had developed an infection at the site of her rods This required a series of wound vac treatments to help her body to heal. She spent about six weeks in the hospital. It was not easy on her.
September 2013: After weeks in the hospital, Alyssa at home standing (leaning), showing us she will continue to amaze us. Towards the end of the month, she came down with pneumonia, it slowed her down a bit but she pulled through it.
October 2013: Alyssa still recovering from being sick, dressed up with her friends at Lauren's house. By the time actual Halloween came, she was feeling better and dressed up with her siblings.
November 2013: An uneventful month ( aside from Thanksgiving), which is what we needed. We stayed close to home, Alyssa didn't mind, she got to snuggle all she wanted with her dad.
December 2013: Big girl rolling! Alyssa received her first wheelchair! She looks like a big kid in it. Her little sister wants to get in it all the time too, which means remember to put the brake on so no one rolls away. Alyssa also had surgery this month and all went well (yea!!)
January 2014: Alyssa came down with pneumonia. We attempted to keep her closer to home by taking her to our local hospital. They were not equipped to manage Alyssa's needs, so she was transported to CHOP. She had a lot of fluid build up, so she had an ultrasound of her heart to make sure it was resolving. Thankfully Alyssa returned home a little over a week later.
February 2014: Alyssa returned to the hospital with another respiratory infection, she was home from the last visit about a week. She had a 12 day hospital-stay-cation. By the end she was all smiles, happy to head home!!
March 2013: Alyssa attends a Lauren's House 2 to 3 times a week for about 4 hours in order to receive her therapies and specialized instruction. This is Alyssa showing off, standing nice and tall in her stander.
April 2014: Another sleep study. The rods have helped Alyssa to grow a lot! The "extra" room has given her lungs more room. We've seen changes in her obstructive sleep apnea, so to confirm what we have observed we headed back to the sleep lab. As a result of this study, Alyssa was taken off bi-pap, she no longer required that level of support at night. Even though her apnea improved, she still had significant enough spells to warrant the use of a c-pap nightly. Small steps inthe right direction!
May 2014 Alyssa hanging with her little sister. Again another quiet month and we happily enjoyed it.
June 2014: Alyssa on the cusp of turning six, ended her 5th year with smiles.
...We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
September 2013: After weeks in the hospital, Alyssa at home standing (leaning), showing us she will continue to amaze us. Towards the end of the month, she came down with pneumonia, it slowed her down a bit but she pulled through it.
October 2013: Alyssa still recovering from being sick, dressed up with her friends at Lauren's house. By the time actual Halloween came, she was feeling better and dressed up with her siblings.
November 2013: An uneventful month ( aside from Thanksgiving), which is what we needed. We stayed close to home, Alyssa didn't mind, she got to snuggle all she wanted with her dad.
December 2013: Big girl rolling! Alyssa received her first wheelchair! She looks like a big kid in it. Her little sister wants to get in it all the time too, which means remember to put the brake on so no one rolls away. Alyssa also had surgery this month and all went well (yea!!)
January 2014: Alyssa came down with pneumonia. We attempted to keep her closer to home by taking her to our local hospital. They were not equipped to manage Alyssa's needs, so she was transported to CHOP. She had a lot of fluid build up, so she had an ultrasound of her heart to make sure it was resolving. Thankfully Alyssa returned home a little over a week later.
February 2014: Alyssa returned to the hospital with another respiratory infection, she was home from the last visit about a week. She had a 12 day hospital-stay-cation. By the end she was all smiles, happy to head home!!
March 2013: Alyssa attends a Lauren's House 2 to 3 times a week for about 4 hours in order to receive her therapies and specialized instruction. This is Alyssa showing off, standing nice and tall in her stander.
April 2014: Another sleep study. The rods have helped Alyssa to grow a lot! The "extra" room has given her lungs more room. We've seen changes in her obstructive sleep apnea, so to confirm what we have observed we headed back to the sleep lab. As a result of this study, Alyssa was taken off bi-pap, she no longer required that level of support at night. Even though her apnea improved, she still had significant enough spells to warrant the use of a c-pap nightly. Small steps inthe right direction!
May 2014 Alyssa hanging with her little sister. Again another quiet month and we happily enjoyed it.
June 2014: Alyssa on the cusp of turning six, ended her 5th year with smiles.
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