I know that's a cheesy title, but hey, its too appropriate not to use!
The good - Wyatt's two bottom teeth have come through! I suspected this last week and the dentist at the cleft clinic told me it was wishful thinking. Now I have to say "mama knows best!". I think I may be more impressed with the fact that I knew they were coming, than I am that they are here! That's terrible - but true - he he he
The Bad - The Dr says I also have gall bladder stones and need to have my gall bladder removed. We'll deal with this at a later date as we are sure most of my pain is caused by the cysts.
The Ugly - Eric was throwing up and on the toilet all day. He also has a temperature and bad aches. Wyatt has lost his appetite and has had 2 bad diapers. You know, at this point I think you have to laugh. Its like someone out there is trying to teach me that "it could always be worse." Umm - does anyone know who I can talk to, to let them know that I "get it" and that the lesson can end now?
Sunday, April 30, 2006
Monday, April 24, 2006
Ovarian Cysts
I'm down to pumping twice a day. The freedom is awesome! For those of you that don't know, the reason I have to stop pumping is because I have 4 ovarian cysts. Last Sunday one of them burst and landed me in the ER. At any rate, I have to take pain medication and "the pill" - neither of which are o.k. for Wyatt to drink. I have mixed emotions, as I was hoping to pump for a year. I am very pleased I made it to 6 months. I have no other choice at this point. I have been in a lot of pain. To put it bluntly, I am shitted off that I got dealt this card on top of of everything else.
Denver Cleft Team Appointment
Wow! What a long day! Let me start off by saying that it snowed in Denver today AND that I still loved Denver. With that said, here's the run down of today's appointments.
11am - 1pm Dr Sujansky the geneticist. We all loved her. She's an old German woman that reminded me of Dr Ruth LOL. She doesn't think Wyatt has Sticklers - she thinks he has a different collogen mutation called Spondyloepiphyseal dysplacia or SED (dwarfism). She measured Wyatt and me and thinks I have a mild form and said she needs a full skeletal of Wyatt to get more info on him. This wasn't a shock to us as this mutation had already been mentioned. She said she wanted the third opinion from the Opthalmologist and that the one we've been referred to at Denver Children's also has a genetics background. So this saga goes on.
1pm Social Worker. This was basically a nice introduction and overview of how the team likes to do things and what we could expect. Her role was to make sure any specific issues we felt we were having were going to be addressed by the team.
2pm Met with TWO surgeons. We have our choice of which one we prefer. I LOVE the fact that they have this option. Eric and I liked both surgeons and it will be hard to choose! Don't you love that problem?! Dr. Ketch is a plastic surgeon and said he'd do the palate repair between 12 - 18 months. He said Wyatt would have to be off his bottle and would have to wear the arm restraints for 3 weeks after surgery. The second surgeon, Dr Allan, is also an ear, nose and throat specialist. He said he would do the surgery around 11 - 12 months and that it would be O.K. to use the Haberman after surgery and that Wyatt would wear his restraints for 2 weeks. I think I am leaning towards Dr. Allan becuase he spent a lot of time with us and didn't seem to be in a hurry. He also checked Wyatt's ears and his tubes are fine and he said we didn't need to meet with the ENT in the Springs. So I can cancel an appointment - yay! Oh - both surgeons said that Wyatt will need 1 surgery to repair the palate and a possible second surgery at around 5yrs old for speech correction. This is all exactly what we were told in Birmingham so we were very happy that there were no radical changes.
We discussed Wyatt's feeding issues and how he doesn't like the corn oil in his formula and how the fortefied formula seems to be constipating him. Wyatt lost weight for the first time. The cleft team pediatrician said that we have to go back to our pediatrician in the Springs next week, rather than 3 weeks from now for a weight check. If things don't improve we will need to consider a feeding tube again. This time we would do an NG feeding tube, which is one we'd insert once a day, every day and not a nice option. I'm feeling guilty about not pumping becuase the milk wasn't constipating him.
We then saw:
*An audiologist who wants to do a hearing test at 9 months old.
*A speech therapist who suggests a minimum of monthly sessions after Wyatt's repair.
*An occupational therapist who gve us 4 new Habeman bottles (yippee!) and watched us feed Wyatt. She was happy with our technique. She gave us the new bottles because the old ones have too fast of a flow and don't encourage Wyatt to suck. She also said we should set up a regular monthly appointment with someone in the Springs to follow with Wyatt's progress.
*A dentist who said that Wyatt will need to see a dentist every 6 months when the time comes.
I think that's everyone. We liked all of the team - what a relief! I guess we have to take a few days to soak in everything and decide how to proceed.
11am - 1pm Dr Sujansky the geneticist. We all loved her. She's an old German woman that reminded me of Dr Ruth LOL. She doesn't think Wyatt has Sticklers - she thinks he has a different collogen mutation called Spondyloepiphyseal dysplacia or SED (dwarfism). She measured Wyatt and me and thinks I have a mild form and said she needs a full skeletal of Wyatt to get more info on him. This wasn't a shock to us as this mutation had already been mentioned. She said she wanted the third opinion from the Opthalmologist and that the one we've been referred to at Denver Children's also has a genetics background. So this saga goes on.
1pm Social Worker. This was basically a nice introduction and overview of how the team likes to do things and what we could expect. Her role was to make sure any specific issues we felt we were having were going to be addressed by the team.
2pm Met with TWO surgeons. We have our choice of which one we prefer. I LOVE the fact that they have this option. Eric and I liked both surgeons and it will be hard to choose! Don't you love that problem?! Dr. Ketch is a plastic surgeon and said he'd do the palate repair between 12 - 18 months. He said Wyatt would have to be off his bottle and would have to wear the arm restraints for 3 weeks after surgery. The second surgeon, Dr Allan, is also an ear, nose and throat specialist. He said he would do the surgery around 11 - 12 months and that it would be O.K. to use the Haberman after surgery and that Wyatt would wear his restraints for 2 weeks. I think I am leaning towards Dr. Allan becuase he spent a lot of time with us and didn't seem to be in a hurry. He also checked Wyatt's ears and his tubes are fine and he said we didn't need to meet with the ENT in the Springs. So I can cancel an appointment - yay! Oh - both surgeons said that Wyatt will need 1 surgery to repair the palate and a possible second surgery at around 5yrs old for speech correction. This is all exactly what we were told in Birmingham so we were very happy that there were no radical changes.
We discussed Wyatt's feeding issues and how he doesn't like the corn oil in his formula and how the fortefied formula seems to be constipating him. Wyatt lost weight for the first time. The cleft team pediatrician said that we have to go back to our pediatrician in the Springs next week, rather than 3 weeks from now for a weight check. If things don't improve we will need to consider a feeding tube again. This time we would do an NG feeding tube, which is one we'd insert once a day, every day and not a nice option. I'm feeling guilty about not pumping becuase the milk wasn't constipating him.
We then saw:
*An audiologist who wants to do a hearing test at 9 months old.
*A speech therapist who suggests a minimum of monthly sessions after Wyatt's repair.
*An occupational therapist who gve us 4 new Habeman bottles (yippee!) and watched us feed Wyatt. She was happy with our technique. She gave us the new bottles because the old ones have too fast of a flow and don't encourage Wyatt to suck. She also said we should set up a regular monthly appointment with someone in the Springs to follow with Wyatt's progress.
*A dentist who said that Wyatt will need to see a dentist every 6 months when the time comes.
I think that's everyone. We liked all of the team - what a relief! I guess we have to take a few days to soak in everything and decide how to proceed.
Sunday, April 23, 2006
Wednesday, April 19, 2006
Blackmail Picture
My dad was out visiting and when I showed him this picture he said that Wyatt might not be too happy about me publishing it! he he he. I LOVE IT!
Tuesday, April 18, 2006
More Doctor Stuff
The pediatric opthalmologist said that Wyatt's eye sight was perfect for his age. I asked her if Myopia could correct itself as Wyatt was diagnosed with myopia at 12 days old. She said that he was incorrectly diagnosed and that Wyatt did not have Stickler Syndrome and she would not need to to him again until he was 4yrs old.
Many things bothered me about our visit. 1. She didn't seem concerned with Wyatt's history 2. Only a geneticist can diagnose Stickler Syndrome because it is multi-faceted and complex and if she convinced a pediatrican that Wyatt didn't have Sticklers then it would be hard to continue to get authorizations from the insurance company, 3. her findings conflicted with the first findings and since Wyatt has a complex condition you'd think she'd want to see him in 1 year - not 3.5! She spoke to Eric and I like we were idiots and she even told us she wasn't sure Wyatt has Pierre Robin and asked me if I understood that just because he has a cleft doesn't mean he has PRS - a lot of children have small jaws. I told her his jaw had grown out quite a lot in 6 months and that the Cleft team had offically diagnosed him as well as the pediatrician present at his birth. She was just down right arrogant!
In any case, I met with another pediatrcian and was very happy him. His name is Dr. Maynard. Dr. Maynard actually took the time to read Wyatt's history, ask questions and LISTENED when I spoke - fancy that! He said he thought we should get a third opinion on the eye exam from Denver Childrens, which made me very happy. If the next opthalmologist says his eyesight is fine, then I will jump for joy! I did call the geneticist back in Alabama and he said that Wyatt's first eye exam only found 1 unit of myopia and only in his left eye. He said its very hard to do an accurate exam at birth and that the second exam might be correct. He said he'd also feel comfortable with a third exam since we need to be cautious. If we're not, we could miss a retinal tear or something similar which would cause Wyatt to go blind - its not something to take lightly.
As far as weight - Wyatt weighed in at 14lbs1oz. He put on just less than .5oz a day. Our pediatrician in Alabama would have been very concerend, however, our new one said he was satisfied. I am nervous, but also relieved - we were having such a hard time keeping up with 1oz per day! Dr. Maynard also said to add 1tsp of corn oil to 22 calorie formula and milk instead of cereal. I was pleased with this as Wyatt's special bottle doesn't work well with the thickness of the cereal and Wyatt's little body wasn't agreeing with so much cereal either.
So all in all, I'm feeling better. Still anxious/excited to meet Wyatt's new team in Denver. The new Dr's are all so different and have very different ideas about Wyatt's care. It can be unsettling to be told to disregard the last 6 months of advice from the Alabama Drs - which has happened with both the new pediatrician and the new opthalmologist (not that I'll be going back to her!).
Many things bothered me about our visit. 1. She didn't seem concerned with Wyatt's history 2. Only a geneticist can diagnose Stickler Syndrome because it is multi-faceted and complex and if she convinced a pediatrican that Wyatt didn't have Sticklers then it would be hard to continue to get authorizations from the insurance company, 3. her findings conflicted with the first findings and since Wyatt has a complex condition you'd think she'd want to see him in 1 year - not 3.5! She spoke to Eric and I like we were idiots and she even told us she wasn't sure Wyatt has Pierre Robin and asked me if I understood that just because he has a cleft doesn't mean he has PRS - a lot of children have small jaws. I told her his jaw had grown out quite a lot in 6 months and that the Cleft team had offically diagnosed him as well as the pediatrician present at his birth. She was just down right arrogant!
In any case, I met with another pediatrcian and was very happy him. His name is Dr. Maynard. Dr. Maynard actually took the time to read Wyatt's history, ask questions and LISTENED when I spoke - fancy that! He said he thought we should get a third opinion on the eye exam from Denver Childrens, which made me very happy. If the next opthalmologist says his eyesight is fine, then I will jump for joy! I did call the geneticist back in Alabama and he said that Wyatt's first eye exam only found 1 unit of myopia and only in his left eye. He said its very hard to do an accurate exam at birth and that the second exam might be correct. He said he'd also feel comfortable with a third exam since we need to be cautious. If we're not, we could miss a retinal tear or something similar which would cause Wyatt to go blind - its not something to take lightly.
As far as weight - Wyatt weighed in at 14lbs1oz. He put on just less than .5oz a day. Our pediatrician in Alabama would have been very concerend, however, our new one said he was satisfied. I am nervous, but also relieved - we were having such a hard time keeping up with 1oz per day! Dr. Maynard also said to add 1tsp of corn oil to 22 calorie formula and milk instead of cereal. I was pleased with this as Wyatt's special bottle doesn't work well with the thickness of the cereal and Wyatt's little body wasn't agreeing with so much cereal either.
So all in all, I'm feeling better. Still anxious/excited to meet Wyatt's new team in Denver. The new Dr's are all so different and have very different ideas about Wyatt's care. It can be unsettling to be told to disregard the last 6 months of advice from the Alabama Drs - which has happened with both the new pediatrician and the new opthalmologist (not that I'll be going back to her!).
Tuesday, April 11, 2006
Wyatt's New Doctors
A quick update on all the medical stuff. We went to see Wyatt's new pediatrician a couple of weeks ago and I wasn't very happy with him (this is an understatement.) In any case, I was able to get all the referrals for the specialists into the system and I have changed to another pediatrican in the same practice. Our new insurance company has appointed a case manager, Nancy, to Wyatt. Having a case manager is a god send as she helps me with all the paperwork and behind the scenes stuff for the insurance company.
Wed, Apr 12 Opthalmologist appointment.
We're going to have Wyatt's eyes checked again to see if his Myopia has gotten any worse. It was suggested by the pediatrician that no Dr can diagnose myopia at 12 days old and that a false diagnosis of myopia would mean the geneticist was wrong about Wyatt having Stickler Syndrome. I am very anxious to see what the Opthalmologist has to say.
Mon, Apr 17 New pediatric appointment.
We will meet the new pediatrican and, hopefully, we will like him. This appointment will be to check Wyatt's weight gain. Wyatt did not gain any weight while we packed up and moved here and stayed at 13lbs 9oz (10th percentile). We've started adding cereal to all of his bottles to really chunk him up. Unfortunately, he is eating less of the new mixture. Wish us luck - we want good weight gain and a nice visit with the new Dr.
Mon, Apr 24 Cleft Clinic at Denver Children's.
We'll be consulting with the new surgeon to find out when he'd be comfortable closing Wyatt's palate, an occuaptional therapist to discuss Wyatt poor eating habits and ways to improve, a dentist, an ear nose and throat specialist to check his ear tubes and a social worker to talk about the effects of Wyatt's condition on our family etc.
I am working on getting a genetics appointment set up. Looks like I may have to wait until July - I am waiting for a call back.
There is apparantly a "Feeding Clinic" in town. I will have to get Wyatt's pediatrician to put a referral in the system for it. I am going to pursue that avenue heavily!
Wed, Apr 12 Opthalmologist appointment.
We're going to have Wyatt's eyes checked again to see if his Myopia has gotten any worse. It was suggested by the pediatrician that no Dr can diagnose myopia at 12 days old and that a false diagnosis of myopia would mean the geneticist was wrong about Wyatt having Stickler Syndrome. I am very anxious to see what the Opthalmologist has to say.
Mon, Apr 17 New pediatric appointment.
We will meet the new pediatrican and, hopefully, we will like him. This appointment will be to check Wyatt's weight gain. Wyatt did not gain any weight while we packed up and moved here and stayed at 13lbs 9oz (10th percentile). We've started adding cereal to all of his bottles to really chunk him up. Unfortunately, he is eating less of the new mixture. Wish us luck - we want good weight gain and a nice visit with the new Dr.
Mon, Apr 24 Cleft Clinic at Denver Children's.
We'll be consulting with the new surgeon to find out when he'd be comfortable closing Wyatt's palate, an occuaptional therapist to discuss Wyatt poor eating habits and ways to improve, a dentist, an ear nose and throat specialist to check his ear tubes and a social worker to talk about the effects of Wyatt's condition on our family etc.
I am working on getting a genetics appointment set up. Looks like I may have to wait until July - I am waiting for a call back.
There is apparantly a "Feeding Clinic" in town. I will have to get Wyatt's pediatrician to put a referral in the system for it. I am going to pursue that avenue heavily!
Sunday, April 09, 2006
T.V. Junkie
We turned the T.V. on and Wyatt wanted to watch it. I wouldn't turn him around to see the T.V. so he became very insistant and decided to arch his back so that he could watch it upside down!
Wyatt's First Hiking Trip
The Garden of The Gods is about 15 minutes from our house! Its amazing. Wyatt enjoyed being outside. The snowcapped mountain in the background in Pikes Peak.
Wyatt's First Snow
On the way from Alabama to Colorado we got stuck in Hays, KS for 2 nights because of a snow storm. It was the first day of Spring! We didn't care. We were happy to stop and rest after 3 days of driving and it was exciting to see all the pretty snow.Doesn't the one of Wyatt on the bed look like a re-enactment of a Christmas Story?!
I'm Gonna Be a Cowboy Baby!
Well we figured since we were moving to cowboy country we'd better school Wyatt in the ways of the wild west. Anyone that knows our cat, Cleo, knows this is hysterical!
Subscribe to:
Posts (Atom)