Emily F.
Diagnosis: Mitochondrial Disorder
In June, we finally got the call from Canine Assistance that the funding for Emily’s service dog had come in. We are all so excited. We sent Emily’s application to them in June 2008. We know now that she is scheduled for the service dog training camp in January 2011. This will mean traveling to Georgia for two weeks! We still need about $300.00 to help with the expenses for that trip. I think Emily has asked us every day since 2008 when her puppy is coming. She is so excited.
We continue with labs twice a week. Emily’s IG levels are being monitored for 4 months with twice/week labs. We lost our first lab tech who was so great at finding her veins. The new tech struggles more to find a vein (her veins are hard to find and access), but the new tech is so sweet and cares so much. We are very grateful about that. Hoping and praying we get good answers from the immunologist about all these tests soon. We also continue with IVIG hospital admissions every 4 weeks. Poor Emily just hates accessing her port. It’s so upsetting for her. She also continues with seizures - although since the increase in her IVIG, they have definitely been more spread out. Unfortunately, she had a seizure that was on the other side of her brain recently and that has us on guard.
In August, our very dear speech therapist resigned and we are now on the hunt for a new one. I’m hoping to get all these labs finished up before we start speech again. School is going fairly well this year. Emily is much more involved and seems to be grasping letters (somewhat).
We had hoped to take a small vacation this summer, but it didn’t work out. We feel burned out and need a break in order to keep trudging down this path.
Thanks to each of you for reaching out to our family with your encouraging notes/letters/packages. It is very exciting to see what comes in the mail. It does make our whole family smile.
Natalie (Emily’s mom)
Emily F.
Diagnosis: Mitochondrial Disorder
In March, we continued the fight for Emily’s stroller. We also learned that Emily’s Vagus Nerve Stimulator would have to be replaced (low battery). That, unfortunately required surgery. While she was under for the surgery, she also had a muscle biopsy done for futher Mito testing. That gave her another ugly scar to add to her list. They take the biopsy on the thigh. Still awaiting results. The seizure cycles continue and sleep is just the most exhausting thing. She is up every few hours. She gets the rest she needs, but it is broken into small segments throughout the night. Emily’s IVIG was increased and we are seeing some positive results from the increase. It takes us about an extra hour at the hospital to infuse, but we will do what it takes to help her.
In April, we received the exciting news that Emily was finally approved for her wheelchair. It took nearly a year and a lot of battles. We also learned that Emily is slated to receive her seizure service dog sometime in the year 2010. That is very exciting news. Hoping to hear from them soon (Canine Assistants). Emily continues with her school work at home and her speech therapy at the hospital. She continues to show progress, but it is very slow. We’ll focus on the progress though.
In May, we had our appointment with the new doctor (immunologist). We are very hopeful that she will be able to put some answers together for us and maybe a better treatment plan. Not sure what the future holds with this, but we are staying hopeful. Currently, this doctor is doing lab work on Emily twice a week for the next month to check on and monitor several things. We are excited to have this doctor on our team.
We are so blessed to receive so many cards/letters/e-mails/packages from all of you who continue to encourage us on this journey. I hate that I cannot send each person a personal note of thanks, but I hope you all read this and know how much it means to us and how touched we are that you care for and pray for our family. We ALL look forward to checking the mail each day (a nice break from all the overdue bill notices).
Our deepest thanks to each of you.
Love,
Natalie (Emily’s mom)
Emily F.
Diagnosis: Mitochondrial Disorder
Port access at home has gotten a little (okay) a lot more stressful since we moved to a longer needle. So we have decided to let our sweet IVIG nurse handle the needle issue at the hospital for now. It’s been nice not having that full burden to bear right now. Although Emily is still very upset when we have to access her, her nurse is doing a really good job. We know having such a great nurse won’t last forever, but we will enjoy it as long as we can.
Of course, Emily’s had more grand-mal seizures and a really bad cycle of them in January - right before her birthday party. After each seizure, Emily is paralyzed on the right side of her body for about an hour. We are concerned that those stroke-like episodes are starting to do some permanent damage. We notice that the right side of her body is obviously much weaker than the left. You can see it in her mouth and tongue and she drags her foot when walking (slightly, but noticeably). She will also let her right hand hang or flop and use the left hand. She is right-handed.
It was nice to have a seizure-free Christmas day. We were so grateful for all the MACS folks who have sent us beautiful, encouraging Christmas cards and Emily’s birthday cards and Valentine’s Day cards. Such thoughtful, caring folks.
We are waiting on our pediatrician’s office to finalize another letter for the wheelchair/stroller issue. We will use that for the appeal process. We’re trying not to let this completely discourage us. We know God has his hand in all the details. Just sad that the process has to go on for so long in this way. Two letters have already been submitted from two different doctors and one would think that would be more than sufficient info for the approval process…not so..
Thanks so much for continuing to love and care for our family. We so much appreciate all your prayers and encouraging notes.
Love,
Natalie (Emily’s mom)
