Last weekend we had our official combined birthday party for Mira, Jonah, Beau, and Evie (friends of ours) at a local swimming/community center in Mission. The party had all of the grandeur and splendor that one could hope for - balloons, hats, goofy sunglasses, and of course, lots of cake. A special thanks to Erin for organizing the party and getting the festivities in order and to Aura, Ware, Addy, and Truman for making the trip in to celebrate with us.
The 4th was a lot of fun - despite the Marching Cobras not being in the lineup this year at Villagefest. Budget cuts are hitting hard this year to Prairie Village apparently. I didn't think that Eli was going to run into his archenemy, Sluggerrrr (the Royal's Mascot) for their third annual Villagefest Smackdown. As luck would have it, Eli and Sluggerrr did eventually meet up on the concourse at Kaufman Stadium that afternoon at the Royals game. Sluggerrr gave Eli a big hug and no one got punched or kicked - I think this year, it was a draw.
This past week has been pretty hectic to say the least. Sarah and I have been on the fence about taking Mira to see a specialist, Dr. Harry Chugani, in Detroit. Dr. Chugani is a neurologist with extensive experience and exposure with children with Infantile Spasms. I have corresponded with him through email over the past few years, asking questions, which he always responds to very quickly. Prior to actually seeing Dr. Chugani in clinic, Mira would be required to have a 24 hour EEG and a PET scan, neither of which she has had in the past. We originally had everything (EEG, PET, and consult) scheduled for the first week in August, but have since postponed the trip.
Going to Detroit would require us to be there for nearly a week, which isn't that big of a stretch from a travel standpoint, it frankly has more to do with putting Mira through additional questionable testing. It's all speculative at this point - looking for a needle in a haystack to a certain degree. For now, we are going to put the trip on hold and see Mira's regular neurologist again, before we potentially reschedule something for Detroit. We are also considering a trip to the Mayo Clinic, which we also want to discuss with her neurologist.
One of tests that Mira has not had in several years is a MRI. She has had two in the past - her first when she was originally diagnosed at 11 weeks old and another when she turned one. Her neurologist thinks it would be a good idea to have another MRI prior to seeing him, to see if there have been any significant changes over the past 3 years. We have the MRI scheduled for this upcoming Monday.
Mira's latest hunger strike has been going on seemingly forever. She is drinking plenty, but snubs absolutely everything from a spoon. The Gerber Goop, oatmeal, and her usual staples have lost their appeal for some reason, thus we resorted to our old standby, fresh baked sweet potatoes. She wouldn't eat a bite yesterday, but we managed to get a half of a bowl in her this evening, which was her first 'full' meal in over a week.
On the flip side, the tooth fairy has been paying (literally and figuratively speaking) more visits to Eli over the past few weeks. Eli's left front tooth fell out last week to which he replied, 'aren't front teeth worth more money to the Tooth Fairy and shouldn't I get a bigger toy for this one?' Yes, I suppose they are and I will relay that message to the old TF and see that you are adequately compensated. Eli is already a chief negotiator at age 6.
We are finally seeing some progress with the addition. After 6 weeks of frustration with our concrete sub, he finally had his crew pouring the walls today. It has been a comedy of errors with the foundation guy and I cannot wait to get him off of the site - he is unprofessional, unreliable, and frankly, just dishonest. The good news is that he is almost done. Good riddance. The framers will start in a few days.
In all of our hustle, craziness, and headaches over the past week with the house, I not only forgot my Dad's birthday last week, but even forgot to wish him a belated birthday on the phone last night when we talked. Sorry, Dad - Happy Birthday!!!
The 4th was a lot of fun - despite the Marching Cobras not being in the lineup this year at Villagefest. Budget cuts are hitting hard this year to Prairie Village apparently. I didn't think that Eli was going to run into his archenemy, Sluggerrrr (the Royal's Mascot) for their third annual Villagefest Smackdown. As luck would have it, Eli and Sluggerrr did eventually meet up on the concourse at Kaufman Stadium that afternoon at the Royals game. Sluggerrr gave Eli a big hug and no one got punched or kicked - I think this year, it was a draw.
This past week has been pretty hectic to say the least. Sarah and I have been on the fence about taking Mira to see a specialist, Dr. Harry Chugani, in Detroit. Dr. Chugani is a neurologist with extensive experience and exposure with children with Infantile Spasms. I have corresponded with him through email over the past few years, asking questions, which he always responds to very quickly. Prior to actually seeing Dr. Chugani in clinic, Mira would be required to have a 24 hour EEG and a PET scan, neither of which she has had in the past. We originally had everything (EEG, PET, and consult) scheduled for the first week in August, but have since postponed the trip.
Going to Detroit would require us to be there for nearly a week, which isn't that big of a stretch from a travel standpoint, it frankly has more to do with putting Mira through additional questionable testing. It's all speculative at this point - looking for a needle in a haystack to a certain degree. For now, we are going to put the trip on hold and see Mira's regular neurologist again, before we potentially reschedule something for Detroit. We are also considering a trip to the Mayo Clinic, which we also want to discuss with her neurologist.
One of tests that Mira has not had in several years is a MRI. She has had two in the past - her first when she was originally diagnosed at 11 weeks old and another when she turned one. Her neurologist thinks it would be a good idea to have another MRI prior to seeing him, to see if there have been any significant changes over the past 3 years. We have the MRI scheduled for this upcoming Monday.
Mira's latest hunger strike has been going on seemingly forever. She is drinking plenty, but snubs absolutely everything from a spoon. The Gerber Goop, oatmeal, and her usual staples have lost their appeal for some reason, thus we resorted to our old standby, fresh baked sweet potatoes. She wouldn't eat a bite yesterday, but we managed to get a half of a bowl in her this evening, which was her first 'full' meal in over a week.
On the flip side, the tooth fairy has been paying (literally and figuratively speaking) more visits to Eli over the past few weeks. Eli's left front tooth fell out last week to which he replied, 'aren't front teeth worth more money to the Tooth Fairy and shouldn't I get a bigger toy for this one?' Yes, I suppose they are and I will relay that message to the old TF and see that you are adequately compensated. Eli is already a chief negotiator at age 6.
We are finally seeing some progress with the addition. After 6 weeks of frustration with our concrete sub, he finally had his crew pouring the walls today. It has been a comedy of errors with the foundation guy and I cannot wait to get him off of the site - he is unprofessional, unreliable, and frankly, just dishonest. The good news is that he is almost done. Good riddance. The framers will start in a few days.
In all of our hustle, craziness, and headaches over the past week with the house, I not only forgot my Dad's birthday last week, but even forgot to wish him a belated birthday on the phone last night when we talked. Sorry, Dad - Happy Birthday!!!
1 comment:
Hi Marc,
Those pictures are great! Happy birthday to Mira from all of us at Wellsphere.
I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network, and I'd like to invite you to learn more about it and apply to join at Wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.
Best,
Hua
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