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Tuesday, September 29, 2009
Trip to Indianapolis-LPA Medical Conference
We went to the LPA Midwest Medical Conference over this past weekend. It was a very worthwhile car trip. Thank goodness we had the new minivan!! It kept the kids almost totally entertained watching movies and listening to their own music for the long drive.
We left on Friday after picking Aiden up from the bus stop. We made a quick stop so I could keep my appointment with the dermatologist and we were on the road by around 4:30p. We drove to the Dublin, OH area and stopped for dinner at a Quaker Steak and Lube. The kids loved the restaurant and all the cars hanging from the ceiling! We arrived at our hotel in Indianapolis around 11:30 pm and finally got tucked into bed a little after midnight. Aiden had slept for about the last hour in the car and Emmi had fallen asleep shortly before we got to the hotel. They were EXHAUSTED!! Emmi and I lucked out because we got to sleep in the comfy bed and Eric and Aiden shared the pull out couch, which had little if any mattress on it!!
We got up at 7am to make sure we got to the conference on time...we could have slept for hours more! The conference was at the Riley Children's Hospital in Indy. It is next to the IUPUI campus so it was somewhat challenging to find exactly where we needed to be. The conference started with opening remarks and introductions of all the doctors, many of whom are on the Little People Medical Advisory Board.
We had our first appointment with Dr. Michael Ain. He is an orthopaedist, as well as a little person. I was most looking forward to meeting him. Having gone through medical school and residency myself, I would never have imagined stature being a deterrent to being an excellent physician. I have read his story online and he had been flat out told that his patients would not respect him based only on the fact that he stands only about 4 ft 3 inches tall. On the contrary, many people travel from very far just to see him, myself included. As an average height parent of a little person, what better person to take care of your child than someone who has been through it and who lives with the same condition each day and has been so successful in life! I am sure he will be a great role model for Max. Also, he is a surgeon at Johns Hopkins and has a great reputation. If Max needs orthopaedic surgery, I am sure he will be in very good hands with Dr. Ain. He was quite personable and funny. He told us that Max looks good now. Nothing to worry about at this point. He feels that Max has a slight kyphosis and told us to roll a washcloth up for behind his back in the car seat to help push his lower back in. He said he will see us at our next trip to Johns Hopkins in February, but that if we had any questions in the meantime, not to hesitate to call him. He seemed to make himself very available if we needed to speak with him. I believe it was his calling to become a doctor for little people. We may never know why things happen the way they do, and I do wonder what Max's calling will be in life, but I believe Dr. Ain is doing just as he was meant to do.
We also met with Psychiatry...(wow, somedays I really feel I need one of those on a regular basis!!). She felt as thought we are coping quite well with things.
We met with Dr. Bellus who is a geneticist from the University of Colorado. He was super nice. He talked about the specific genetic mutation associated with achondroplasia. He did say that other genes do interact with the gene that is mutated so there is no way to know for sure how exactly it will be expressed. We do know that Max will be short statured, but because Eric is tall and I am slightly taller than the average, Max could be a little taller (maybe gain a few more inches over the norm of 4'-4'3" that is usual for a male with achondroplasia). At that point, those few possible inches will just help with adaptability in his environment, but he will still always be short statured.
I met with the nutritionist from Akron Children's Hospital. (Eric was in the waiting room at this point with a 3 year old girl who was quickly melting down!!!! Yes, it was Emmiloo!!! Finally after that she fell asleep in the stroller and slept for a good hour and a half!) The nutritionist was wonderful, although we talked very little about nutrition :-) She is a little person and we ended up talking mostly about our kids and nursing and upcoming LPA events. At this point, Max is feed on demand (and he is very demanding!! hehe). Nutrition will become a bigger issue when he starts eating table foods.
Our last appointment of the day was with Dr. Richard Kerbavaz, an ENT from Oakland Children's Hospital. I thought he was great too!! He had such practical advice and has had a lot of experience with little people. He examined Max and thought his nasal passages seemed normal and that his external ear canals were quite large (they are often times very small in achons and can make it hard to see the ear drum). He did not see any fluid in Max's ears and gave me advice on what to look for if I examine him (although I usually leave that to Dr. Phelps). He was very knowledgable and seemed genuinely interested in being there.
By the time we left, we were all exhausted! It had been a very busy day but well worth it! It was nice to get the opinions of other specialists who deal with little people in their clinics on a regular basis. We really went to have Max looked at and to gather more information, as well as meet some other parents and other little people. We met a few parents who plan to be at the regional LPA event in Perrysburg in October. We hope to hook up with them again there.
We decided to drive to the Columbus area to spend the night on Saturday night (Eric REFUSED to sleep on that pull out couch again and I can't blame him!). We stayed in a 2 BR Residence Inn and all got a good nights sleep. Both kids fell asleep with Eric in the one bedroom and I had the whole other bed to myself!!! (except when little Maxy woke up to eat...but I didn't mind sharing :-) ) We surprised the kids by taking them to the Columbus Zoo on Sunday. We had never been there before and got in for half price because we are members of the Cleveland Zoo. It is a great zoo!!! We were there for about 3 hours and didn't even make a dent in it! They have a bunch of rides and a roller coaster that we spent a bunch of time on. We saw monkeys and birds and the fish, but not many other animals. We need to go back and devote an entire day to that zoo!
On the way home, we stopped at Easton Place and took Aiden to the Lego store. There are not many Lego stores around so we figured that was a great place to stop for dinner. WOW!! Easton Place is huge! Tons of shopping! I need to go there and spend a weekend just wandering around shopping (anyone up for a trip!!!) When we got back on the road, it was about 3 hours until we reached home. We were all so tired that we all just fell into bed.
Overall, it was a great weekend. We are looking forward to going to the Regional LPA event in Perrysburg the weekend of October 23rd. It is at the Holiday Inn Holidome. The kids are super excited about all the fun stuff there will be to do there!!
Well, I'll keep you posted...this was a pretty long post so if anyone read this far..thanks...:-) I figure I may as well include all the details since I am taking the time to write it down... I wish I was a more eloquent writer and more witty! I will work on it!!
We left on Friday after picking Aiden up from the bus stop. We made a quick stop so I could keep my appointment with the dermatologist and we were on the road by around 4:30p. We drove to the Dublin, OH area and stopped for dinner at a Quaker Steak and Lube. The kids loved the restaurant and all the cars hanging from the ceiling! We arrived at our hotel in Indianapolis around 11:30 pm and finally got tucked into bed a little after midnight. Aiden had slept for about the last hour in the car and Emmi had fallen asleep shortly before we got to the hotel. They were EXHAUSTED!! Emmi and I lucked out because we got to sleep in the comfy bed and Eric and Aiden shared the pull out couch, which had little if any mattress on it!!
We got up at 7am to make sure we got to the conference on time...we could have slept for hours more! The conference was at the Riley Children's Hospital in Indy. It is next to the IUPUI campus so it was somewhat challenging to find exactly where we needed to be. The conference started with opening remarks and introductions of all the doctors, many of whom are on the Little People Medical Advisory Board.
We had our first appointment with Dr. Michael Ain. He is an orthopaedist, as well as a little person. I was most looking forward to meeting him. Having gone through medical school and residency myself, I would never have imagined stature being a deterrent to being an excellent physician. I have read his story online and he had been flat out told that his patients would not respect him based only on the fact that he stands only about 4 ft 3 inches tall. On the contrary, many people travel from very far just to see him, myself included. As an average height parent of a little person, what better person to take care of your child than someone who has been through it and who lives with the same condition each day and has been so successful in life! I am sure he will be a great role model for Max. Also, he is a surgeon at Johns Hopkins and has a great reputation. If Max needs orthopaedic surgery, I am sure he will be in very good hands with Dr. Ain. He was quite personable and funny. He told us that Max looks good now. Nothing to worry about at this point. He feels that Max has a slight kyphosis and told us to roll a washcloth up for behind his back in the car seat to help push his lower back in. He said he will see us at our next trip to Johns Hopkins in February, but that if we had any questions in the meantime, not to hesitate to call him. He seemed to make himself very available if we needed to speak with him. I believe it was his calling to become a doctor for little people. We may never know why things happen the way they do, and I do wonder what Max's calling will be in life, but I believe Dr. Ain is doing just as he was meant to do.
We also met with Psychiatry...(wow, somedays I really feel I need one of those on a regular basis!!). She felt as thought we are coping quite well with things.
We met with Dr. Bellus who is a geneticist from the University of Colorado. He was super nice. He talked about the specific genetic mutation associated with achondroplasia. He did say that other genes do interact with the gene that is mutated so there is no way to know for sure how exactly it will be expressed. We do know that Max will be short statured, but because Eric is tall and I am slightly taller than the average, Max could be a little taller (maybe gain a few more inches over the norm of 4'-4'3" that is usual for a male with achondroplasia). At that point, those few possible inches will just help with adaptability in his environment, but he will still always be short statured.
I met with the nutritionist from Akron Children's Hospital. (Eric was in the waiting room at this point with a 3 year old girl who was quickly melting down!!!! Yes, it was Emmiloo!!! Finally after that she fell asleep in the stroller and slept for a good hour and a half!) The nutritionist was wonderful, although we talked very little about nutrition :-) She is a little person and we ended up talking mostly about our kids and nursing and upcoming LPA events. At this point, Max is feed on demand (and he is very demanding!! hehe). Nutrition will become a bigger issue when he starts eating table foods.
Our last appointment of the day was with Dr. Richard Kerbavaz, an ENT from Oakland Children's Hospital. I thought he was great too!! He had such practical advice and has had a lot of experience with little people. He examined Max and thought his nasal passages seemed normal and that his external ear canals were quite large (they are often times very small in achons and can make it hard to see the ear drum). He did not see any fluid in Max's ears and gave me advice on what to look for if I examine him (although I usually leave that to Dr. Phelps). He was very knowledgable and seemed genuinely interested in being there.
By the time we left, we were all exhausted! It had been a very busy day but well worth it! It was nice to get the opinions of other specialists who deal with little people in their clinics on a regular basis. We really went to have Max looked at and to gather more information, as well as meet some other parents and other little people. We met a few parents who plan to be at the regional LPA event in Perrysburg in October. We hope to hook up with them again there.
We decided to drive to the Columbus area to spend the night on Saturday night (Eric REFUSED to sleep on that pull out couch again and I can't blame him!). We stayed in a 2 BR Residence Inn and all got a good nights sleep. Both kids fell asleep with Eric in the one bedroom and I had the whole other bed to myself!!! (except when little Maxy woke up to eat...but I didn't mind sharing :-) ) We surprised the kids by taking them to the Columbus Zoo on Sunday. We had never been there before and got in for half price because we are members of the Cleveland Zoo. It is a great zoo!!! We were there for about 3 hours and didn't even make a dent in it! They have a bunch of rides and a roller coaster that we spent a bunch of time on. We saw monkeys and birds and the fish, but not many other animals. We need to go back and devote an entire day to that zoo!
On the way home, we stopped at Easton Place and took Aiden to the Lego store. There are not many Lego stores around so we figured that was a great place to stop for dinner. WOW!! Easton Place is huge! Tons of shopping! I need to go there and spend a weekend just wandering around shopping (anyone up for a trip!!!) When we got back on the road, it was about 3 hours until we reached home. We were all so tired that we all just fell into bed.
Overall, it was a great weekend. We are looking forward to going to the Regional LPA event in Perrysburg the weekend of October 23rd. It is at the Holiday Inn Holidome. The kids are super excited about all the fun stuff there will be to do there!!
Well, I'll keep you posted...this was a pretty long post so if anyone read this far..thanks...:-) I figure I may as well include all the details since I am taking the time to write it down... I wish I was a more eloquent writer and more witty! I will work on it!!
Monday, September 21, 2009
Emmiloo turns 3!!!!
WOW!! I can't even BELIEVE that Emmi turned 3 on Friday!!!! It seems like just yesterday that she was the baby! Now she is a big sister AND a little sister...she LOVES that!
She had a party at lunch on her birthday with all her friends at school. We brought pizza, chips, oranges, juice boxes and chocolate chip cookies for her to share with her friends. She had to wear her Snow White Princess dress and crown to school that day. She looked BEAUTIFUL... We took the kids to Chuck E Cheese on Friday night and they had a ball! The pizza left a lot to be desired but they didn't care. It was a great day!
Saturday, we had her family and friends birthday party and she wore her Snow White dress again. Eric took her to get her hair done at the salon. She had such a cute little up do with a big red bow in it. She was so excited about the pinata at her party and the kids had tons of fun beating at it with a baseball bat. Those things are pretty hard to open up! We got here a princess ice cream cake from DQ because there are no eggs in them and she was covered in blue frosting. It was very yummy!
Wednesday, September 2, 2009
TRIP TO JOHNS HOPKINS- PART 2
Well, we achieved what we wanted to at Johns Hopkins this week…REASSURANCE. We just left the office of the Pediatric Pulmonologist, Dr. Sterni, who thought that Max is doing great. She said his lungs sound perfect and his chest is on the large size for achondroplasia. She honestly thinks we have a higher probability of Max having problems related to the fact that Eric had issues with wheezing and allergies as a child and comes from a highly atopic family more than we will have issues from Max having achondroplasia. She was GREAT!! She looked at Max’s sleep study and knew the doctor from Rainbow who read it. She said that doctor is like the guru in reading sleep studies. She said she sometimes wonders who interprets sleep studies at other hospitals and that some people even come to Johns Hopkins just to make sure it is done and interpreted correctly, but that she knows ours was read by one of the best. We were very pleased with that information! And of course they thought Max was SUPER cute too!!
So, in all, all the doctors that we have seen here have been wonderful. They think Max is doing great and have no reason to think that will change. We need to be vigilant about watching for any changes in his breathing or his head circumference but they are very encouraged by how he looks now. I am so glad we are hooked in with such a great group of doctors. They like to see their patients every 6 months , so we will plan on another visit around February. I may do that visit alone if there are no issues so that Eric can be home with Aiden and Emmi. It was hard to leave them and I know it was hard for them too.
Now, I feel like we can go home and really ENJOY Max without worrying about all the things I was so worried about before we came. He is an amazing little one and I want to just enjoy him being an infant:-)
We did get to enjoy this trip a little too! We went to DC yesterday and wandered through the Smithsonian Museam of Natural History. They had a really cool exhibit about bones there. They showed how they do forensics using bones and had lots of bone samples. Most of the museums closed early yesterday so we didn't get to see too much but it was a beautiful day to just walk around and look at the sights. No Obama sightings though!! We had dinner at a quaint little Italian restaurant and then headed back to the hotel. Today before our appointment, we wandered around downtown Baltimore and ate lunch outside. It was a fun trip, although we wish Aiden and Emmi could have been with us too!
Well, we just got on the freeway to drive home. What a BEAUTIFUL day for a drive!!! It is really a lovely drive and we even get to drive through a mountain…which may give me a bit of a panic attack if I really think about all the weight of the mountain above my head…so, I am going to just push that thought out of my mind…
So, in all, all the doctors that we have seen here have been wonderful. They think Max is doing great and have no reason to think that will change. We need to be vigilant about watching for any changes in his breathing or his head circumference but they are very encouraged by how he looks now. I am so glad we are hooked in with such a great group of doctors. They like to see their patients every 6 months , so we will plan on another visit around February. I may do that visit alone if there are no issues so that Eric can be home with Aiden and Emmi. It was hard to leave them and I know it was hard for them too.
Now, I feel like we can go home and really ENJOY Max without worrying about all the things I was so worried about before we came. He is an amazing little one and I want to just enjoy him being an infant:-)
We did get to enjoy this trip a little too! We went to DC yesterday and wandered through the Smithsonian Museam of Natural History. They had a really cool exhibit about bones there. They showed how they do forensics using bones and had lots of bone samples. Most of the museums closed early yesterday so we didn't get to see too much but it was a beautiful day to just walk around and look at the sights. No Obama sightings though!! We had dinner at a quaint little Italian restaurant and then headed back to the hotel. Today before our appointment, we wandered around downtown Baltimore and ate lunch outside. It was a fun trip, although we wish Aiden and Emmi could have been with us too!
Well, we just got on the freeway to drive home. What a BEAUTIFUL day for a drive!!! It is really a lovely drive and we even get to drive through a mountain…which may give me a bit of a panic attack if I really think about all the weight of the mountain above my head…so, I am going to just push that thought out of my mind…
Tuesday, September 1, 2009
OUR FIRST TRIP TO JOHNS HOPKINS WITH MAX
Hello!! Well, we made it to Baltimore yesterday for our first visit to Johns Hopkins with Max. The trip was pleasant and uneventful. It took us about 8 hours because we stopped 3 times to feed Max and a few other times for food and potty. We easily could have made it in 6 hours if we didn't have to stop so much. What a beautiful drive! We got the kids off to school yesterday morning without a problem and headed out after that. We arrived here at about 4:30pm. We have a beautiful view from our hotel room over the harbor and the weather has been so nice, although very fall-like.
Last night, we met up with some new friends that live in Annapolis and have a beautiful LP daughter named Tessa (Hi Sarah!!). Tessa is so cute and has a million dollar smile :-) Any day now Max will give me one of those big beautiful grins!! Can't wait...he is warming up slowly...giving little half smiles and smirks here and there... It was so nice to meet another couple who is in the same boat we are with an infant with achondroplasia. Max has an adorable little girlfriend :-). I look forward to watching them both grow up.
This morning we got up nice and early for our 9am appointment with genetics. We left the hotel at 8am, although the Outpatient Clinic is only about 1 mile away...good thing because, despite the navigation in our van, we got lost... so, we didn't end up arriving at our destination for 45 minutes! What a system they have here...you walk in and get a wrist band from security (although no one checked are bags or anything) and then you go to another window and tell them where you are going. When you get to the right department, you go to another receptionist who takes your information. You actually take a number like at the deli department of the grocery store. Despite the numbers and all the different desks you check in at, it was very easy and very personable. Everyone was so friendly. We hardly waited at all to see either doctor (That was AMAZING to me!!!) When we got to genetics, we had a little scare when the nurse got Max's blood pressure at 140/61... I was having a panic attack until she repeated it with a bigger cuff and got a normal reading. We did NOT come here for any new diagnoses!
The geneticist, Dr. Hoover-Fong was great! She had lots of information to share and examined Max. She said his chest/rib cage is actually on the large size for achondroplasia...which is very reassuring to me. She said his mid face is only mildly depressed (Not something I would EVER have noticed-very common with this condition and can be quite pronounced) so she HOPES he won't have a lot of chronic problems with colds, ear infections. His head circumference is fine. She hates car seats because of the way their heads flop down, not just with LP infants but all infants. She said the Chicco carrier (like a baby bjorn) and the swing we have been using is fine and that the exersaucer will be fine in the future if we make sure to stuff towels in around him so it supports his back. We plan to just lay him flat in the stroller when we are out and about and not use the car seat unless we are in the car. Overall, she is very reassured by how things have been going in the past 6 weeks!!
They like to see kids back every 6 months, but we don't have to come that frequently (although we will!). They will set up all the specialist appointments for us each time we come. It is a very user friendly set up here. They will send us the clinic note from today with lots of educational information and will send that all to Dr. Phelps too.
After we left genetics, we went to see Dr. Ahn in Neurosurgery. Once again, painless check in process and very short wait time. He was very nice. He reviewed Max’s MRI in the room with us and said it looked fine, no concerns at this time. He felt his tone was normal (yippee) and was not concerned about the tremors/clonus that Max has. I have been SOOO worried about the tremors and the clonus but he said, with a normal MRI, there is nothing else to be worried about and it should resolve in 6-12 months… They are the result of his immature neurologic system (he IS an infant..) and that they will go away in time. He has seen a lot of people with achondroplasia because of the skeletal dysplasia clinic there so I feel reassured. That is really what this whole trip was about…REASSURANCE…luckily we didn’t have any true medical issues that brought us up here.
After our appointments we had lunch at Fogo de Chao (Brazilian Steakhouse-one of Eric’s favorite restaurants.) They had the most amazing looking salad bar I have ever seen!!! It was artwork!! And the staff all mills around waiting to be helpful. They pull out your chair and push it back in every time you stand up! I swear they would have helped me nurse Max if I needed it!!! Eric is convinced they thought we were VIP’s of some sort with all the attention we got! We are now on our way to DC. It is only about a 45 minute trip so we figured we would head up there and do some sightseeing! Max is hoping to meet the president!
So, we will see Peds Pulmonary tomorrow. She will review Max’s sleep study and assess his breathing. We see her at 2:30pm and then will get on the road to head back home. We miss Aiden and Emmi immensely!! It is tough to be away from them even for a day, but I know they are in good hands at home.
Well, that is all for now. I will update again after pulmonary tomorrow. Have a great day!!
Last night, we met up with some new friends that live in Annapolis and have a beautiful LP daughter named Tessa (Hi Sarah!!). Tessa is so cute and has a million dollar smile :-) Any day now Max will give me one of those big beautiful grins!! Can't wait...he is warming up slowly...giving little half smiles and smirks here and there... It was so nice to meet another couple who is in the same boat we are with an infant with achondroplasia. Max has an adorable little girlfriend :-). I look forward to watching them both grow up.
This morning we got up nice and early for our 9am appointment with genetics. We left the hotel at 8am, although the Outpatient Clinic is only about 1 mile away...good thing because, despite the navigation in our van, we got lost... so, we didn't end up arriving at our destination for 45 minutes! What a system they have here...you walk in and get a wrist band from security (although no one checked are bags or anything) and then you go to another window and tell them where you are going. When you get to the right department, you go to another receptionist who takes your information. You actually take a number like at the deli department of the grocery store. Despite the numbers and all the different desks you check in at, it was very easy and very personable. Everyone was so friendly. We hardly waited at all to see either doctor (That was AMAZING to me!!!) When we got to genetics, we had a little scare when the nurse got Max's blood pressure at 140/61... I was having a panic attack until she repeated it with a bigger cuff and got a normal reading. We did NOT come here for any new diagnoses!
The geneticist, Dr. Hoover-Fong was great! She had lots of information to share and examined Max. She said his chest/rib cage is actually on the large size for achondroplasia...which is very reassuring to me. She said his mid face is only mildly depressed (Not something I would EVER have noticed-very common with this condition and can be quite pronounced) so she HOPES he won't have a lot of chronic problems with colds, ear infections. His head circumference is fine. She hates car seats because of the way their heads flop down, not just with LP infants but all infants. She said the Chicco carrier (like a baby bjorn) and the swing we have been using is fine and that the exersaucer will be fine in the future if we make sure to stuff towels in around him so it supports his back. We plan to just lay him flat in the stroller when we are out and about and not use the car seat unless we are in the car. Overall, she is very reassured by how things have been going in the past 6 weeks!!
They like to see kids back every 6 months, but we don't have to come that frequently (although we will!). They will set up all the specialist appointments for us each time we come. It is a very user friendly set up here. They will send us the clinic note from today with lots of educational information and will send that all to Dr. Phelps too.
After we left genetics, we went to see Dr. Ahn in Neurosurgery. Once again, painless check in process and very short wait time. He was very nice. He reviewed Max’s MRI in the room with us and said it looked fine, no concerns at this time. He felt his tone was normal (yippee) and was not concerned about the tremors/clonus that Max has. I have been SOOO worried about the tremors and the clonus but he said, with a normal MRI, there is nothing else to be worried about and it should resolve in 6-12 months… They are the result of his immature neurologic system (he IS an infant..) and that they will go away in time. He has seen a lot of people with achondroplasia because of the skeletal dysplasia clinic there so I feel reassured. That is really what this whole trip was about…REASSURANCE…luckily we didn’t have any true medical issues that brought us up here.
After our appointments we had lunch at Fogo de Chao (Brazilian Steakhouse-one of Eric’s favorite restaurants.) They had the most amazing looking salad bar I have ever seen!!! It was artwork!! And the staff all mills around waiting to be helpful. They pull out your chair and push it back in every time you stand up! I swear they would have helped me nurse Max if I needed it!!! Eric is convinced they thought we were VIP’s of some sort with all the attention we got! We are now on our way to DC. It is only about a 45 minute trip so we figured we would head up there and do some sightseeing! Max is hoping to meet the president!
So, we will see Peds Pulmonary tomorrow. She will review Max’s sleep study and assess his breathing. We see her at 2:30pm and then will get on the road to head back home. We miss Aiden and Emmi immensely!! It is tough to be away from them even for a day, but I know they are in good hands at home.
Well, that is all for now. I will update again after pulmonary tomorrow. Have a great day!!
SLEEP STUDY RESULTS ARE IN!!
Well, we got the results of Max’s sleep study and it was overall very reassuring. No significant breathing issues at all at this time. Yeah Max!! So, at this point no issues with the MRI or the sleep study!!
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