After some discussion last week with the Make-A-Wish Southern Alberta Chapter, my husband and I have decided to change Stephanie's wish from meeting Jewel to meeting the Disney Princesses at Disney World. Although she still enjoys listening to Jewel, we thought Disney World might be more memorable for her and easier to comprehend.
Well on Friday the flights were confirmed! November 12-19th my sister Karen and I will be taking Stephanie to Disney World!!! We will be staying at a wonderful resort that was built specifically to provide families and children of such wishes an enchanted place to stay - Give Kids The World Village. This resort in itself is 70 acres and has an incredible amount of activities to enjoy but we also will receive a 3 day pass to Disney World and it's different parks, a 2 day pass to Universal Studios and a 1 day pass to Sea World! Stephanie will get to meet some of the princesses during our visit to Disney World. She is beyond excited now and thinks that when we get in the car each day that we are going to Disney World.
In addition, the wish granting manager advised us that the Canadian National Board of Directors for Make-A-Wish will be personally adopting Stephanie's wish and will be making the donations to make her wish come true. They are very excited about this news since it is the first time the National Board has adopted a wish for their own! A profile of Stephanie will be presented to them, as well as details of the visit and a plaque to give appreciation of their generosity.
I think this will be an exciting journey for Stephanie and our family!!! Time to get her passport finalized...
Sunday 26 August 2012
Home Sweet Home
After a long and drawn out stay at Children's Hospital, Stephanie and I finally came home last Saturday evening. 27 days in hospital was not what we were expecting when we were admitted on July 23rd for Stephanie's corpus callosotomy surgery. After getting sick a few days after surgery, with vomitting, fever spikes, not wanting to eat or drink and not wanting to sit up or walk, it was determined that she may have some form of infection...meaning meningitis. Because she was already on antibiotics when she was tested, doctors did not accept the negative test results and decided to treat Stephanie with a full course of antibiotics for bacterial meningitis. This meant another 3 weeks of two types of antibiotics.
I am happy to say that she is doing well at home this week! She is tired and does lay down alot but she is eating and drinking well. She's having some post antibiotic bowel issues but nothing we can't handle! We'll be meeting with the neurologist on September 19th to assess her recovery, her seizures and what the next course of action will be. If Stephanie continues to have seizures that involve both sides of her body, we may have to do another MRI to determine how much of the callosum was severed and if we need to have the second surgery to severe it completely. As always, time will tell...
Welcome home Stephanie!!!!
I am happy to say that she is doing well at home this week! She is tired and does lay down alot but she is eating and drinking well. She's having some post antibiotic bowel issues but nothing we can't handle! We'll be meeting with the neurologist on September 19th to assess her recovery, her seizures and what the next course of action will be. If Stephanie continues to have seizures that involve both sides of her body, we may have to do another MRI to determine how much of the callosum was severed and if we need to have the second surgery to severe it completely. As always, time will tell...
Welcome home Stephanie!!!!
Saturday 4 August 2012
Getting better!
Thank goodness we were here when infection was suspected and not home recovering. Antibiotics seem to be kicking butt!
Thursday 2 August 2012
Not as planned...
Sorry for the delay in posting! I have been keeping some family and friends updated but wasn't in the mind set to officially "think" about what I wanted to write about. So Stephanie's surgery itself went fairly well and she was eating and drinking on the Monday and Tuesday after. However, by Wednesday she was spiking fevers and throwing up. She was already started on antibiotics after the surgery thank goodness! By Friday she was having trouble sitting up from what seemed like pain in her head. She would grimace and squint her eyes and grab her head.
The weekend proved much of the same...fevers up and down, not eating or drinking, didn't want to sit up or walk. The team decided to do some blood cultures to determine if there was an infection. We were told this Monday that the cultures were not accurate due to there already being antibiotics in the blood which hampered the bacteria from growing giving a possible false negative result for infection. Because of this and all her symptoms the doctors did still suspect meningitis and Stephanie will now be staying in hospital until at least August 11.
She had a PICC line inserted today which is a central line to just above her heart to administer the antibiotics directly. Apparently the drugs are very harsh on your veins. Even if this isn't meningitis, there certainly is/was some kind of process going on within Stephanie to make her ill...and I don't think it was just because she had surgery. It has now been 10 days post operation, her wound is mostly healed and she is only today finally starting to eat a little and sit up and walk without too much complaint!
As for seizure activity, I am happy to say that she definitely has less severe seizures now! They used to last a minute or two but now last anywhere from a couple seconds to 20 seconds or so. The big concern is when she is standing or walking will the seizures still cause her to drop. There is some evidence that she will still fall, since some of her seizures include tonic in both arms which means the seizure activity crossed over (generalized) to the other side of her brain. She is also having some new seizures that the neurologist actually said was a good thing. She is experiencing seizures where her head turns severely to the left and her eyes turn up and to the left as well. This means that the seizure activity is localized in one area and is starting on the right side of the brain. In future they may be able to do a grid placement on her brain to determine the exact location of where the seizures are originating from and possibly remove that part of the brain. For now though, let's hope that the corpus callosotomy was successful enough to save her from the drop seizures. If not, we may have to consider doing a complete callosotomy in the future (the surgeon only dissected 2/3 of the callosum).
I will be posting some pictures of Stephanie's experience tonight on a separate page on the sidebar. Also, Christa from Make-A-Wish dropped in last Friday for a nice visit and brought Stephanie a Jewel cd to enjoy during her recovery! Thanks Christa! (pic posted in Make-A-Wish gallery).
Long post, sorry! Pray that Steph does well the next week so we can go home!
The weekend proved much of the same...fevers up and down, not eating or drinking, didn't want to sit up or walk. The team decided to do some blood cultures to determine if there was an infection. We were told this Monday that the cultures were not accurate due to there already being antibiotics in the blood which hampered the bacteria from growing giving a possible false negative result for infection. Because of this and all her symptoms the doctors did still suspect meningitis and Stephanie will now be staying in hospital until at least August 11.
She had a PICC line inserted today which is a central line to just above her heart to administer the antibiotics directly. Apparently the drugs are very harsh on your veins. Even if this isn't meningitis, there certainly is/was some kind of process going on within Stephanie to make her ill...and I don't think it was just because she had surgery. It has now been 10 days post operation, her wound is mostly healed and she is only today finally starting to eat a little and sit up and walk without too much complaint!
As for seizure activity, I am happy to say that she definitely has less severe seizures now! They used to last a minute or two but now last anywhere from a couple seconds to 20 seconds or so. The big concern is when she is standing or walking will the seizures still cause her to drop. There is some evidence that she will still fall, since some of her seizures include tonic in both arms which means the seizure activity crossed over (generalized) to the other side of her brain. She is also having some new seizures that the neurologist actually said was a good thing. She is experiencing seizures where her head turns severely to the left and her eyes turn up and to the left as well. This means that the seizure activity is localized in one area and is starting on the right side of the brain. In future they may be able to do a grid placement on her brain to determine the exact location of where the seizures are originating from and possibly remove that part of the brain. For now though, let's hope that the corpus callosotomy was successful enough to save her from the drop seizures. If not, we may have to consider doing a complete callosotomy in the future (the surgeon only dissected 2/3 of the callosum).
I will be posting some pictures of Stephanie's experience tonight on a separate page on the sidebar. Also, Christa from Make-A-Wish dropped in last Friday for a nice visit and brought Stephanie a Jewel cd to enjoy during her recovery! Thanks Christa! (pic posted in Make-A-Wish gallery).
Long post, sorry! Pray that Steph does well the next week so we can go home!
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