Today I want to make a list of some of the things I am thankful for in relation to Lizzie's epilepsy diagnosis.
I am thankful that right now Lizzie's medications are working for her and she hasn't had any seizures recently.
I'm thankful that Lizzie isn't currently showing the developmental delays that the doctors said she would. I know with her diagnosis there's a possibility that she might not always be doing as well as she is right now, so I'm grateful that we have her at her best here and now.
I'm thankful for the many families from our church who have supported us by bringing dinners. Some families have even done it more than once. We are so lucky to have so many people taking care of us when we have so many other things we're trying to take care of.
I'm thankful that we have a friend who is a pharmacist and who has been putting Lizzie's medications (which are prescribed to us in pill form) into a liquid compound so they're easier for us to give her.
I am thankful for all the people who have contributed to Lizzie's Fund. Our church set up the fund to help us with medical bills, but people we don't even know have made contributions.
I'm thankful for Children's Mercy Hospital and the expertise of all Lizzie's doctors there.
I'm thankful that we know someone who is a chiropractor and who has offered hyperbaric oxygen treatments at her office for Lizzie. We haven't taken her up on it yet as we're still doing a little research and talking with her doctor, but we appreciate the offer.
I'm thankful for the free childcare that my mom provides us every day when Tom and I go to work. I am also thankful for the free childcare that many other people have offered us so that Tom and I can get errands done or have some time to ourselves.
I'm thankful for the literally thousands of people who have prayed for Lizzie or sent her positive thoughts. We believe that the prayers are working and are a big part of the reason she's doing so well these days.
I am thankful that I have so many things to be thankful for. Happy Thanksgiving from our family to you and yours.
Thursday, November 24, 2011
Wednesday, November 23, 2011
Recent appointments
Last Wednesday, Lizzie had a visit from two women from our county's Infant/Toddler Services division. They were there to evaluate her for physical and occupational therapy needs. They watched Lizzie and played with her a little, asked me lots of questions, and filled out their paperwork. They both thought she looked like she was doing really well and commented that the babies they're used to seeing don't usually look so good.
By virtue of Lizzie's diagnosis, she qualifies for therapy, so the plan is for them to take the information they gathered at their visit and present her case to the rest of the staff. Then a therapist will be assigned and they'll come back out to our house in early December for us to meet the therapist and set a schedule for her visits. For the time being, Lizzie will just get some maintenance therapy to make sure that she continues developing at the current rate. If she does start to have some developmental delays, the therapist will be able to notice right away and start working with her to help with those. In six months, we will all sit down together and re-evaluate where she's at to see if any changes need to be made to the plan.
Today, we had another visit with a dietitian at Children's Mercy to evaluate how Lizzie's weight gain is coming along. She weighs 12 lb 9 oz, which they calculated to mean she gained about 20 grams a day since her last appointment. The goal they had for her was to gain between 16 and 24 grams a day, so she landed right smack dab in the middle of that. Her weight now puts her on the growth chart at the 3rd percentile. They were pleased with how she's looking and said to keep doing what we're doing. They asked if she had started solid foods yet, but Lizzie's pediatrician will probably talk to us about those at her six-month checkup in early December. We will meet with the dietitian again in January.
By virtue of Lizzie's diagnosis, she qualifies for therapy, so the plan is for them to take the information they gathered at their visit and present her case to the rest of the staff. Then a therapist will be assigned and they'll come back out to our house in early December for us to meet the therapist and set a schedule for her visits. For the time being, Lizzie will just get some maintenance therapy to make sure that she continues developing at the current rate. If she does start to have some developmental delays, the therapist will be able to notice right away and start working with her to help with those. In six months, we will all sit down together and re-evaluate where she's at to see if any changes need to be made to the plan.
Today, we had another visit with a dietitian at Children's Mercy to evaluate how Lizzie's weight gain is coming along. She weighs 12 lb 9 oz, which they calculated to mean she gained about 20 grams a day since her last appointment. The goal they had for her was to gain between 16 and 24 grams a day, so she landed right smack dab in the middle of that. Her weight now puts her on the growth chart at the 3rd percentile. They were pleased with how she's looking and said to keep doing what we're doing. They asked if she had started solid foods yet, but Lizzie's pediatrician will probably talk to us about those at her six-month checkup in early December. We will meet with the dietitian again in January.
Tuesday, November 1, 2011
News, but not really
Thursday, Dr. K called to say that the genetic test they ran on Lizzie came back with a "benign variant" on the SCN1A gene. He said it was unclear whether this variant is what's causing her seizures. In order to clarify, he wants to test Tom and I to see if we also have the variant on that gene. He said we could be tested at Lizzie's next clinic appointment, which is supposed to be in January (still waiting for them to call us to schedule a date). Potentially, this could be important, because it could give a name to whatever syndrome Lizzie has, which would give us a better idea of how to treat it and what kind of prognosis to expect. All I know right now is that the SCN1A gene is linked to many different types of seizure disorders, depending on what kind of mutation happens and where on the gene it's located. However, since Dr. K isn't in any hurry to test Tom and I, and once he does I assume it will be another 6+ weeks before we get the results, it's going to be a while before we have any more information than that.
November is National Epilepsy Awareness month. Visit www.epilepsyfoundation.org to "Get Seizure Smart" and test your knowledge of seizures, learn more about seizure first aid, and find out what you can do to support those who have been diagnosed with epilepsy.
On a related note, the color for the epilepsy awareness ribbon is lavender. I went to Joann's and bought a roll of ribbon to make some pins. They're nothing fancy, but if you want a ribbon, let me know!
November is National Epilepsy Awareness month. Visit www.epilepsyfoundation.org to "Get Seizure Smart" and test your knowledge of seizures, learn more about seizure first aid, and find out what you can do to support those who have been diagnosed with epilepsy.
On a related note, the color for the epilepsy awareness ribbon is lavender. I went to Joann's and bought a roll of ribbon to make some pins. They're nothing fancy, but if you want a ribbon, let me know!
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