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July 14, 2013
It is so hard to believe it has been a year since Haley had her first surgery July 10, 2012. As we are packing for Haley to leave for Camp Boggy Creek tomorrow, we can’t help but to reflect on how far we have come over this past year and are feeling overwhelmed with how blessed we are🙂 Haley is so excited about Camp Boggy Creek and seeing some of her favorite team members from MCH tomorrow and we couldn’t be happier that she has this to look forward to. Meeting other children that have Epilepsy and have had surgery will be such a blessing for Haley. For those of you who are not familiar with Camp Boggy Creek, check out their website – such a wonderful program!
Haley has had many ups and downs over the past year with her surgeries and recovery but overall has had a wonderful, remarkable recovery. To the best of our knowledge she still remains seizure free, although we are in the process of monitoring her more carefully as there have been two recent incidents that cause us to question possible seizure activity, one at camp two weeks ago and one last weekend here at home. That being said though Haley continues to grow stronger each and every day and has continued to experience fewer auras as each week passes. Her headaches have decreased significantly as well as her anxiety. She continues to be more fatigued, have memory issues and word confusion but considering the alternative of having 6 or more seizures a day we feel these are insignificant and Haley is coping quite well with these remaining issues.
Haley graduated from the 4th grade making the A/B Honor roll. We are so proud of how hard she worked, how determined and driven she was to make the A/B honor roll and are so happy for her that she met that goal! We are scheduled in August for Haley to have a full neuropsychological evaluation and am looking forward to having test results that will better aid us in knowing what needs Haley has and how we can best help her succeed in the Fifth Grade.
Haley has been enjoying this summer to its’ fullest! She has been reflecting quite a bit on how this summer compares to last, but with a very positive attitude and remains grateful for the surgery and how much her life has improved without seizures. This of course helps us all remember to live each day to its fullest and to be grateful for every seizure free moment.
We continue to feel blessed and grateful each and everyday and are so thrilled Haley has come so far. We couldn’t have made it through this past year without our ever supportive family and friends and think of you all often. Your thoughts, prayers, generosity, support and love throughout this year continue to be something the Hubbard family is grateful for EACH day! Thank you!
One of Haley’s “Ups” this year – enjoying a BackStage experience at the Bob Dylan/Dawes concert
thanks to her awesome cousins Taylor and Griffin Goldsmith from the band Dawes🙂
Please click the following link for a little reminder of how far we’ve come🙂
We felt Valentine’s Day would be a great time to bring all of our dear family, friends, neighbors and loved ones up to date on how wonderful Haley is doing in her recovery . We just can’t thank you all enough for the love you have shown our family!
Wow – we have so much to share since our last posting and we are so thrilled to say overall it has all been wonderful!
The number one thing we are most thrilled about is that Haley has now marked her 6 month seizure free anniversary on February 7th!!!!!!!!! Something about hitting this mark has helped us all, especially Haley, be a little more relaxed and less anticipatory of seizure activity. How wonderful it is for our whole family to know that Haley has now lived 6 months with no seizures! We feel so very blessed by this positive result to her surgery and are feeling so hopeful for a seizure free future!
Haley had a follow-up visit with Dr. Sheth mid-January and he was thrilled with the progress she has made! He even took her around to his colleagues and gave them a brief history of Haley’s experience and her positive outcome – or as Haley describes it “Dr. Sheth showed me off to his friends!” LOL! What a wonderful moment for our whole family to witness the chief of neurology at Nemours acknowledge Haley’s miraculous outcome! Haley, her outcome and recovery has truly been an example of God’s power to answer prayers!
Haley has now been back to school for 5 weeks! Her first week back was so exciting and she was so thrilled to be back in school with her friends. However, in typical Hubbard style – she ended the week being escorted out by wheelchair as she began complaining of a weird sensation in her left ankle and we all thought she had sprained her ankle. However after a trip to urgent care, we feel pretty certain it was a return of some the left side tingling she has experienced in the past. Although at first we were afraid this was a set back, Haley has only experienced this sensation a few further times since then and we are now hopeful this was a result of fatigue from returning to such a busy schedule. We have made some simple changes (like naps again) and the sensations have lessened in frequency. Unfortunately though once Dr. Sheth learned of this he discontinued the phase out of Haley’s Tegretol. SO for now we will remain steady on her three medications Onfi, Tegretol and Vimpat.
Haley made the Honor Roll in January and we were so very proud! She has since been struggling with keeping her grades up and it appears this is related to reading, comprehension, processing and memory issues. We are now working extra diligently to help her bring her grades up and over come this. It is difficult to know what to expect of her at this point so we are really trying hard to convince her that it is ok for her to not maintain the grades she is accustomed to as she is still recovering, but Haley is being very hard on herself and this has been a real struggle these last few weeks. School has been marked with ups and downs, seeing friends and spending time with them have been a positive, trying to find a way to where her hair without irritating or focusing on her scar – a silly negative, the disappointing grades a negative, but simply being able to get up and go to school with no seizure activity is such a huge positive – so overall even with this little “hiccups” she has had an AWESOME return to school!!
Fun at the park with Hannah and Hannah’s awesome friends – Izzy, Julia and Marissa🙂
As Haley has no memory of her 9th birthday (she was life-flighted back to Miami the next day) we recently celebrated Haley’s 9 1/2 birthday with a trip to Build-A-Bear and for Haley’s first time – a sleepover!! This may seem like not such a big deal for most 9 year old’s however due to Haley’s numerous night-time seizures she has never been able to have friends sleepover! She was over-the-moon excited and seeing her genuine joy of such a simple thing was very emotional for us. Sometimes it is the simplest things that make you realize just how blessed you are🙂
Haley, Hannah, cousin Jackson, and Haley’s friends Destiny, Alejandra and Kelsey🙂
We are so happy to say Haley continues to remain seizure free!
Haley had a wonderful Christmas and even with all the excitement, travel and extra activity that comes along with the Holidays we saw no increase in her auras. She continues to grow stronger each day and Dad and I both feel Haley’s amazing recovery has been our best Christmas gift this year!
Our family just returned from a long weekend in the NC mountains and Haley tolerated the trip remarkably well. We went on hikes, drove up and down mountains, had a snowball fight, picked icicles, stayed up late and all this with no extra auras, headaches or any other problems! We are so grateful!
We are going school shopping Friday and Haley is thrilled. She is so ready to get back to her day to day routine and so are we. Monday will mark a huge milestone in her recovery and we are so thrilled that we have come this far. Not only will it be her first day back to school but it will be exactly 5 months since her surgery. Her surgery seems like a lifetime ago and we are so grateful to have something so exciting to celebrate on her 5 month anniversary. This year more than ever we are feeling so very grateful for every blessing and we are especially grateful for Haley’s miraculous recovery. We are so looking forward to what 2013 has in store for us. Our family wishes you a very Happy New Year and we are hoping that you find yourself celebrating each blessing, big or small, that comes your way. God is great!
We found ourselves this Thanksgiving reflecting on all the things we are thankful for. How blessed we are to have such a long list!
Haley summed it up well this Thanksgiving, when we asked her what she was most Thankful for she said “my family and God”. Although we are extremely grateful for the miraculous outcome of her surgeries, her 3 months of no seizures and her positive recovery we find ourselves most grateful for the peace God has given us throughout this journey and our amazing family and friends who shouldered the worries for us. We will be eternally grateful to you all. We would have never gotten through this difficult journey without you all being by our side. God is so good, and we are so grateful he has given us such an amazing family and such awesome friends!
We sincerely hope you all had a wonderful Thanksgiving and found yourselves reflecting on your blessings in life , big or small for if there is anything we have learned throughout this it is that we should count our many blessings from God each and everyday.
On Wednesday of last week (11/7/12) Haley awoke with complaints of a headache and left eye blurriness. As the day progressed she began to complain of occasional double vision in her left eye as well. We took Haley to her pediatrician that afternoon where tests were run and he attempted to try to determine what would cause such an issue. At his request we took Haley for bloodwork the next day and then returned to the pediatrician on Friday where we unfortunately had to report that Haley continued to have blurry vision and occasional double vision accompanied by a “terrible” headache. Upon an eye exam at the office her vision was so terrible it was 2300 in both eyes! As you can imagine, Haley had been very uncomfortable throughout this and we desperately wanted to try and find a way to make her feel better.
After discussion between Haley’s pediatrician and Nemours’ neurology Friday it was determined that they feared Haley was experiencing papilledema or hydrocephalus. Both are severe life-threatening medical conditions that involve intracranial pressure caused from fluid build up inside the skull. Not the news we wanted to hear. We were advised to either take Haley to Wolfson’s Children’s Hospital ER so she could be life-flighted back to Miami Children’s Hospital or for us to take her to MCH immediately. We left quickly and drove straight to MCH on Friday afternoon and arrived at the ER by 9:30 p.m.
MCH Nuerology and Dr. Bhatia, Haley’s nuerosurgeon had been in contact with us on our drive down so fortunately they made arrangements for the ER to be ready for us and we were quickly placed in a room and Haley was started on decadron ( an anti-swelling medication) almost immediately. By 1:00 am she stated her headache was much better and there was no blurriness in her right eye at all and the left eye’s blurriness had improved. Haley had an MRI late Saturday afternoon (which she laid still for for 45 minutes – WOW!) and by Sunday morning she awoke with no headache and no eye issues and we received the news that Haley’s MRI was normal. What an awesome answer to prayers!
We were discharged Sunday evening and asked to follow-up with an ophthalmologist. Fortunately Dad has a good friend that is an optometrist who was able to squeeze us in Monday morning, as the first opening with a pediatric ophthalmologist is weeks away. We were happy to hear that Haley’s vision had returned to 20/20 and that there was no apparent optic pressure.
As we are grateful that the decadron was administered quickly and gave her such great relief, unfortunately it also masked where the pressure was coming from so at this point we are awaiting to hear from Nemours nuerology as to what the next step will be. There appears to be a general consensus that pressure was the cause of the issues, but as they were not able to determine from where or why we are left now with hypothesis and best guesses. Not exactly ideal.
To add to our frustration in the middle of this process it was discovered that Haley had been reassigned from her awesome BCBS healthy kids plan to a Medicaid type plan due to her being considered a “medical high risk”leaving us with having to deal with making phone calls, getting back authorizations and the rude awakening that half of Haley’s doctors do not accept this new plan and we are trying to negotiate single case agreements. AHHH! Also not ideal.
Even with the lack of a clear diagnosis, having insurance issues and the frustration both have caused, we are still feeling very blessed and remain so grateful for Haley’s awesome medical team at MCH and here at home and continue to have faith that God will only give us what we can handle.
We are so grateful for all the thoughts and prayers this weekend and are so thrilled to report that Haley is feeling great tonight!
As we are fast approaching Haley’s 3 month anniversary from her last surgery, she continues to remain SEIZURE FREE and November is National Epilepsy Awareness month we felt it was time to share Haley’s story with other families that may be considering surgery or going through a similar struggle with controlling Epilepsy. We have created a “Haley’s Story” tab on her webpage and encourage you to share Haley’s story with anyone you feel would benefit from it. Haley has made it her goal to help other children that have Epilepsy and is excited to celebrate National Epilepsy Awareness month. We continue to thank God everyday for answering our prayers, providing Haley with such an amazing medical team and giving Haley such a positive outcome to her surgery and a relatively smooth recovery thus far.
Since our last posting Haley has been able to attend class a few times, as well as the school dance. A family member has to go with her as she is assigned to Hospital Homebound and she continues to have auras in loud places, but Haley is so excited about going that she doesn’t seem to mind having us tag along. Our goal is to have her in school full-time by January so we are now trying to follow the school schedule at home and our goal is to have her at school for an hour or two at least 2 days a week. Her stamina does seem to be increasing as although she is tired after attending class her naps seem to be shorter each time. Haley is so ready to be back at school full-time but she continues (in typical Haley style🙂 to be a good sport about her limitations.
It is the little things that we continue to be grateful for and one of those were that Haley has been feeling so well that we felt comfortable letting she and Hannah have their annual Halloween Party this year. It was so awesome to see Hannah and Haley enjoying their friends and not have this constant fear that Haley could have a seizure any minute. These moments continue to remind us of God’s answer to all the many prayers for Haley and our family. We are still feeling so very blessed!
We had the awesome news this week that BOTH girls made the AB honor roll! It felt so great to have them both at the Honor Roll breakfast and have their hard work acknowledged. Dad and I just can’t believe that Haley is still able to maintain such great grades. She is so strong and determined. I know this honor roll was the hardest one ever for her. Hannah is doing so well and continues to help Haley in her recovery and to have Hannah make the Honor Roll too was just icing on the cake! Awesome! We are so proud of our wonderful girls!
We are feeling quite sentimental and grateful as Thanksgiving approaches this year. We have so much to be thankful for – Haley’s health and recovery is of course number one, but also our amazingly supportive friends and family, the girl’s wonderfully supportive school staff, Haley’s AMAZING medical team and God’s continued answers to the many prayers for Haley and our family. Thank you to ALL of you!