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April 14, 2010
Last month Sophie had some appointments in Milwaukee. Her first one was with a GI doctor that specializes in cyclic vomiting syndrome. After talking about her symptoms for an hour he diagnosed her with cyclic vomiting syndrome. Cyclic vomiting syndrome is episodes of vomiting that occur the same time of the day with no symptoms. She is fine before and a little after. It was so nice to have an answer after 18 months. I am thankful it isn't worse. He was telling me there are some kids that have 200 episodes a month. Hers isn't near as bad. Also, when she is older instead of vomiting it will more than likely turn into migrains. Which is HORRIBLE news considering the doctors think she is having migrains now due to her arteries in her brain being different. He also mentioned that normally children are diagnosed around 7 years of age. He said its very rare that a child this young is suffering from this. A while ago Sophie was put on a med that increased her appitite. This med also helps with cyclic vomiting syndrome. I noticed a change of her vomiting episodes shortly after she was on this med...I think December she went on it. So what he decided to do was instead of giving her this med twice a day it will change to a bigger dose before bed time. She has only had one episode since. We were supposed to increase her dose but her other GI doctor thinks we better keep it the same due to eating issues.
Her sencond appointment was an MRI/MRA. Was that the most horrible thing! They had a hard time with the IV they gave her something to put her to sleep and some "happy medicine" as they called it...on top of her seditive. Sophia didn't want to wake up for nothing. Normally they won't let you leave until they drink and eat something and keep it down. She woke up a little and had some apple juice. She ate an animal cracker. Drank more juice. We were in recovery for 3 hours. Normally for her its an hour if that. She was so groggy but they let us go. So she was laying in her stroller and she puked everything up! So her coat and stroller were extremely dirty. We still had one more day of appointments yet. So on top of that, we get to the hotel and she is still wobbly. My key wouldnt work. What a mess! At that point I about lost it. So we finally get in the hotel room and she wanted to walk. She couldn't walk all night! She was so crabby and frustrated and so was I. The good news is....her MRI showed no significant changes! SHE DOESN'T NEED ANOTHER MRI FOR A YEAR!!!! I know I have said that before but this time I mean it!!!!
So, the next day she was scheduled for an echo. She was so funny making friends with this other little boy. He wanted a hug and she would run up to him then run away. She is so silly. Anyway, she got sedated again...this time was much better by the way. She went in for her echo and the doctor said NO CHANGES. NO MORE ECHOS UNTIL SHE IS 3!!!! He mentioned something about an anuerism. So of course I got worried. He explained that when a baby is born they have an extra pouch on their heart and once as they breathe air it goes away. (Im sorry if I'm wrong. I am sure someone will read this that knows what they are talking about and think I'm nuts. If you do, message me so I know, thanks) Sophie's didn't. He said it's no threat for her. I had no idea up until now. So that was great news!
Oh and I forgot before the GI doctor she saw her ENT. He said her ears tubes were clear. We have to go see him in July for a check up. He rechecked the hemangioma in her ear canal and said it hasn't gotten any bigger. Her local doctor is keeping an eye on it.
Thats all I have for now. Sorry it took so long to post this. I think I have been saying it for the last few posts. Sorry.
February 14, 2010
Sophie had her ear tubes placed....finally on January 25th. She is doing well. I haven't noticed any changes. She still can only say one word...momma. She is seeing a speech therapist once a week and another one once a month in Milwaukee. Right now they are working on Sophie eating. Which has gone down hill the last few weeks. She is still eating but no veggies, fruit, and meat. She doesn't eat as much as she used to but she is now over 20 pounds!
I recently took Sophie in to get checked because her breathing seemed odd. I wanted to take her in to urgent care because the doctor there used to be her local doctor a year ago. (It's so hard to take her to someone new. I have to explain everything that's wrong with her. Sometimes its so much that I forget to mention some things.) So a nurse took a look at her and said that she needs to be seen in the ER. They took a chest x ray and swabbed her nose for RSV. Her x ray showed that she has pneumonia. That was on Thursday. She is slowly getting better. I am hoping she will get better soon. She is scheduled for an echo on Friday (the 19th). If she isn't better than we will have to reschedule. I really don't want that. Also, we will be meeting a couple families that have childeren with PHACE. If she isn't better then we can't go. I am really looking forward to it. I really don't like my trips to Milwaukee lately, so it would be nice to have something to look forward to. Other than that she has an appointment with a cyclic vomiting doctor which I have been looking forward to. I would like to get some answers to her nasty vomiting episodes. That appointment is on March 3rd along with an MRI. I am praying that after these appointments, things will taper off. If her MRI and echo turn out good then no more for an entire year!!! In a year and a half she will have had 4 echos and 6 MRI's. Oh and a dozen or two of other tests. I can't wait for that light at the end of the tunnel. I have a feeling its close!
December 19, 2009
Ok, I don't know where to begin. We have moved into our new house and are loving it. Taylen is fitting in so well at his new school. We are so happy to live in town and not in the sticks. I miss it a little. I like that a store is right down the road rather than 15 miles away. So, anyway, Sophie still has her double ear infection. She had quite a few appointments in Milwaukee. She started seeing a new ENT. They are going to put tubes in but not until January 25th. Her GI doctor wants to put a scope in her stomach and take biopsies also. Her ENT decided to do a hearing test and it didn't turn out so well. She failed on her left side. That is the side that the ear infection is really bad. He is hoping with her getting tubes will help. We saw her wonderful dermatologist. She believes that Sophie is having migrains. She wants her to see a certain doctor that deals with cyclic vomiting. She recently had an ultra sound done of her kidneys to make sure all is well there.
I had a little problem with Sophie. She was projectile vomiting for over a week. She wasn't eating anything. I was getting so worried. It was so hard to watch her do that and then she was dry heaving. Not only that but what a mess! I took her to the Rice Lake ER one night because she puked 4 times and was really crabby. That was after 5 days of vomiting. They didn't even touch her. I was extremely frustrated. So after the weekend I made an appointment to see her regular doctor. She saw Sophie and saw how crabby she was and got worried. She is usually so happy and she was getting so crabby. She did a check up and said she needed to get admitted to the hospital.. She got an IV and I thought finally. We went home the next day. Of course little Miss Sophie had to puke about an hour after we walked through the door. Talk about frustration. Poor Taylen was so mad. I reasured him we would figure it out. So, the next day I was thinking and she didn't have her pediasure at the hospital because they had none. She didn't puke there. So I switched her pediasure with just milk. Wow what a difference that made. She is back to her awesome little self. She is eating the best I have EVER seen her eat. She is drinking her fluids like crazy. I am so relieved. This has been the best she has done EVER! What a relief.
Also, I would like to share that Sophie is now walking! Can you believe it! She was scooting and walking here and there. Now she is walking all over the place. Today she decided she was done scooting. She looks so funny cause she is so tiny. She also has 5 teeth coming in at the same time. I can't wait until those are through. She has been sleeping through the night since I took her off the pediasure. All I have to say is that life is good for us right now. Every one is doing great!
HAVE A MERRY CHRISTMAS AND A HAPPY NEW YEAR!
October 24, 2009
Our last appointment was with her GI doctor. I didn't get too many answers. All that was said was how much they would like her to eat and drink. Which right now is double of what she is eating right now. We also discussed what happened at her speech and ENT appointments. So that was about it for GI. Today I tried the tricks that her speech therapist showed me and now it's not working. It's starting to get a little bit frustrating. Oh, by the way, I am closing on my house on Wednesday! Taylen is sooo excited. He talks about it just about everyday. I am excited but then I think of the painting and I have to finish packing. Hopefully we can move in less than a couple weeks.
October 22, 2009
Today we saw Sophie's speech therapist. She showed me some more new things that I hope will help. She saw how Sophie eats and thinks there is something going on inside. She is going to talk to her ENT doc and GI doc to see what should be done in terms of tests. Tomorrow we meet with her GI doctor so I hope to get some more answers
October 16, 2009
Sorry it's been a while. We have been so busy. I want to say how much Sophie has changed. She is getting so big. She is getting into EVERYTHING!!! Instead of crawling she is scooting. She can now pull herself up on furnature and can walk along it. We went there about a month ago to meet with her GI doctor. They found us a good speech threapist. They gave me some tips on how to feed her. They also did a GI (barium swallow) They wanted to make sure her throat hemangiomas weren't getting in the way of her eating. It showed that they don't, but for some reason when she eats, she pukes her food back up but she swallows it. That's why she is gagging. She still isn't eating the best. She will is being seen by one of the best Speech therapists ever so that helps big time. She will also be going to see the feeding team in Milwaukee. I hope we can get her to eat better. It's getting a bit frustrating.
A few weeks ago we took her to Milwaukee for dermatology. They wanted to see how she has been doing on her steroids. They noticed her eye lid is sagging more so they wanted her to have her MRI/A early. So that was scheduled for October 7th. Then a week later I took her in to her 1 year check up. I mentioned that I caught her, once, where she quit breathing during a nap and she woke up screaming. Her local doctor got concerned and called her neurologist the next day. So, the next morning I received a phone call from neurology asking how often it is happening. I told them I only saw it once but she does wake up a few times a week screaming. I wasn't sure if this is why or something else. A couple hours later I recieve a call from her neurologist's nurse telling me to take her in ASAP! She told me that it is too dangerous to keep her at home. She told me they would be expecting her in the ER and she will be admitted that night. So I freaked out! I rushed her down there. It took us 5 hours to get her admitted. They didn't know if she should go. It was a mess! They did find out that she had a double ear infection. So we get to our room at about 1am. She only slept a couple hours in the car so I thought she would go right to sleep. Yeah right. In 36 hours she slepts 3 and a half hours. I slept 1 and a half. Besides going crazy from lack of sleep, there were doctors in and out of the room. Every time they asked I would tell them why I brought her here. They would write it down. So, by the end of the day I just told them that it had to be writen down somewhere and I was sick of repeating myself. Then some of them would ask why I brought her down here in the first place. Then I would explain that her neurologist told us to. I told them to go find her and ask her why she wanted Sophie here. By this time I was getting really angry. There was a certain doctor that really made me mad. He wouldn't leave me alone. He kept telling me that it wasn't an emergency and I should have never brought her here. I WASN'T THE ONE THAT MADE THE DECISION TO BRING HER HERE!!!! Yes, I am still upset with that man. Anyway, the first day NOTHING was done. The neurology team explained that she would have a sleep test and a CT scan the next day. So, I left to have supper I came back and the nurse said she would have an MRI/A the next day along with a EEG. I wanted to know what happened with the other plans. She didn't know. I told them that she was supposed to have one a week later from dermatology. They needed to look for certain things. So I decided to take it upon myself to call her dermatology nurse and let her in on what was happening. Of course she was out of the office. So, that night I got a hotel room. I was emotionally and physically exauhsted. The next day she had an EEG and MRI. While she was in the MRI I went to dermatology and went to visit her nurse, Marcia. I love her!!! We sat and talked for an hour. When she got my message she called down to radiology and told them they have to get the images they wanted then get what neorology wanted. GO MARCIA!!!! Talking with her is what I needed. She kept me pretty much sane. The EEG came back normal and from what neorology saw, the MRI/A came back normal. Sophie was discharged at 5pm. I have never been so happy to leave that place. They also messed up on her meds while we were there. Telling me I was wrong!!!! I don't think so. I refused to give her the meds they wanted me to give her. They wanted me to give her 5 times the amount of steroids she usually gets! So I told them I would give her what I had from home. (you can give any kids meds brought from home, they have to be brought up from the pharmacy) They told me I couldn't do that. I told them...watch me. So, needless to say it got changed to what she was supposed to have. So, that was our wonderful story on Sophie's hospital stay.
Now, for some good news. Sophie is officially off of steroids FOREVER!!! I am so happy. Also, while she was in the hospital, I received a phone call from dermatology. They want to do a presentation on Sophie. I thought that was really neat that they picked her. That will be on November 7th. I also got the results from Sophie's MRI/A from dermatology and her vessels and hemangioma is stable!!! She won't need another MRI/A for an entire year!!!! WOOO HOOO!!!
September 7, 2009 (took a while because I was moving)
Hi! Sorry it has been so long since the last update. It's been a busy summer. Taylen is is soccer and just started school so hopefully things will settle down a bit. Also, SOPHIA TURNED ONE YEAR OLD!!!! Her big day was September 2nd!!!
Well, Sophie is back on steroids. I was not very happy with that. I noticed one day that the hemangioma under her tongue has gotten bigger and redder. I took her to Milwaukee just to see if they saw what I saw. They did. They also noticed it getting redder and her eye looked worse. She gave me 3 options...1. leave it and see what it does. 2. Back on steroids. 3. put her on propranolol. (a beta blocker that does wonders for hemangioma's and less side effects. It's risky for Sophia to be put on these due to her blood vessels in her neck and head. That will require a hospital stay of a few days to monitor her blood pressure) So, I chose steroids. We have to go back for her 6 week check up and hopefully they notice a change. Otherwise she will have to be on propranolol.
I also had to take her in the other day for gagging and vomiting. She would gag on EVERYTHING. Anything that came close to her mouth no matter what it was. So, I took her to her local doctor and he said her throat was red and irritated. So he figured it was acid reflux from the steroids. It has gotten better but she is still gaggy. I also forgot what it was like to have a baby on steroids... I miss sleep.
She isn't hitting her milestones. She just learning to scoot. No where near crawling or walking. She is getting into everything as it is. She has quite the personality. She loves to dance, also. She is getting to be a little diva. She will have a small tantrum when she doesn't get what she wants. We all just laugh. She loves her brother. She can be in a horrible mood but once as she sees him, she is all giggles. She has also grown quite fond of the Backyardigans She loves watching them. So, she is mentally the same as a one year old, but she is lacking physically. She got weighed a couple weeks ago and was almost 16 pounds!!! She is getting there! She is still eating baby food and pediasure. Other than that it's hard for her to eat some things. She was doing really good with solids but then just stopped.
Here are some trips coming up....
September 23rd - dermatology
October 22nd - MRI/MRA (radiology)
October 23rd - dermatology
neurology
GI
She will be seeing speech and occupational therapy. It is hard trying to find some around here.
July 29, 2009
Ok... I have a lot to tell this time. Taylen, Sophia, Steph, Maisie, Caleb and I left for Milwaukee on Tuesday July 21st. Wednesday she had a Dermatology appointment which went very well. She is looking so good that we don't have to go back for 4 months!!! At that time she will have another MRI to make sure nothing has changed.
Thursday she had a GI appointment. Her doctor decided to take Sophie off of formula and put her on pediasure for the extra calories. There is more but I don't want to bore you with details. Also they diagnosed her with dysphasia which is difficulty swallowing solids. This means she will be on pediasure for a while and can only have stage 2 baby foods. She also has to start seeing a speech therapist because of this. Also they say she is "developmentally delayed". I already knew this but to be honest I didn't want to see it on paper. So she will have to see her occupational therapist once a week for a while.
Also on Thursday, we got to meet some of the PHACE families. That was sooooo awesome!!!!! It was nice to meet some of the people that I have been talking to all of these months.
Friday was the vascular anomalies conference. That was another awesome day. It was nice to walk into a room full of people and not being stared at. The speakers were great and the kids had fun. Then we got to look at the animals then headed home. I didn't even leave Milwaukee when I got a phone call from neurology. They wanted to see Sophie on Monday. If I didn't take the appointment then she would have to wait until October. So we spent the night at Steph's house (cause it's over an hour drive from her house) Saturday we got home after running errands and an oil change. I had enough time to unpack, laundry and dishes. Oh and then pack again. We left right away in the morning.
Monday Sophia had a neurology appointment. Her doctor happened to be a stroke specialist. Since we have a family history of heart attacks at an early age, she decided to run some blood tests. They ended up taking 6 tubes of blood. Then she also wanted to do an EEG. (They put leads on her head to monitor brain waves) They wanted to do this to see if she is having any type of seizures and to see if her brain is working like a normal 10 month old brain. So far I haven't heard the results.
June 18, 2009
This trip to Milwaukee was awesome. We had a lot of fun. Tasha, Emma, and Taylen went with this time. We went to the children's museum, Fun World, and Chuckie Cheese. Taylen had a blast.
She had her MRI/MRA on Wednesday. They were looking at her main arteries to see if they narrowed some more. They didn't!!! There were no changes from the last MRI!!!! We needed that news. Now she won't need another one for another 6 months. When we went to talk to her dermatologist she said that she thinks Sophia is having migraines. So that was bad news. There isn't anything she can take for it. There is no medicine that is safe for babies so when she is 2 she will be put on some medication for it. That explains a lot. She is also gaining weight. She is up to 14lbs 7 ozs!!! She is slowly getting taller. She is still in 3-6 month clothes. That's ok. I have a feeling she will be going into 9 month clothes here pretty quick. That's all the news I have for now.
May 28, 2009
Sophia wasn't feeling like herself. She was REALLY crabby and wasn't eating. All she wanted to do was sleep so I knew something was up. She woke up from her nap and she was really warm. I took her temp and it was 101.9. I gave her tylenol and called a nurse and they told me to bring her in. After Taylen got off the bus we left. He got to stay at Adam and Jen's house. So, we went to urgent care and he said that she is starting to get an upper respiratory infection and told me to give her tylenol and some TLC. He said that if her fever goes up or she gets more crabby to bring her back. So I went to pick Taylen up and when we got home I took her temp again and it was 104! So I drop Taylen back off (Thanks Adam and Jen) and went to Spooner ER. She has never been there before so it took a while to, as I call it "train them in". It gets old having to tell them what's going on with Sophie's health. It takes a lot of explaining because no doctors around here have heard of PHACE. Anyway, they decided to do some blood work. They had such a hard time getting blood. I ended up leaving the room. She had such a rough night. Then she got a shot of antibiotics in the rear end. They found that her while blood cell count was at 28,000. Normal is 10,000. He said something is going on. So they took a blood culture and a urine sample to test for a urinary tract infection. Her urine came back normal. So now we have to wait for her blood results. In the mean time we have to go see her regular doctor.
May 18, 2009
Her eye appointment went really well. Her eye is doing so well that she doesn't need to be seen until August!!!
She had her cardiology (echo) and dermatology appointment on Friday. She didn't have anything to eat that morning and her echo was at 10:30. She was in the best mood. The nurses were so surprised how happy she was. She was smiling, squealing, and giggling at everyone. You would never know that she has problems. Then she had to be sedated. She had her little nap. As soon as her eyes opened she was pulling at wires, sticking anything and everything close by in her mouth. Then she was as hyper as ever. Her cardiologist asked if she was sedated. He was so surprised on how happy she was. He did say that there were no significant changes and she doesn't need another echo until next year!!!!
Then she had her dermatology appointment. Her doctor said she was doing so well that she will be off of steroids next month!!! June 12th!!!! I can't wait. I am so happy that we are getting good news for a change.
April 27, 2009
Her next appointments are:
May 4th- ophthalmology
May 15th- cardiology/echo and dermatology
June 17th- MRI and dermatology
April 9, 2009
Her upper GI or barium swallow was on Monday. She couldn't eat 4 hours before the procedure. The procedure went horrible. She didn't want to drink the barium. So they had to make her swallow it by using a syringe. Then they had to put a feeding tube to put the barium into her stomach. They didn't find anything unusual.
Her swallow study was Tuesday. Again, she couldn't eat 4 hours before the procedure. This went a lot better. They mixed the barium in with her formula and baby food. She ate it with no problems. They found that some of her liquids starts to go into her lungs and then goes right back out. They weren't sure if it was because of the lump. She did say that there seems to be some extra tissue that makes this happen.
Today was her scope. This time she had to go 6 hours without eating, but they were late starting things so she actually went 9 hours without eating. She did really good considering she was starving. She started out in day surgery, but after looking at her history they thought it would be a good idea to put her in the big OR. That way there would be more people in case something happened. The doctor still didn't find anything. So now she is going to talk to someone from speech and find out what to do. I wish she wasn't such a mystery. Oh and she is still losing weight. GRRRRRR!
April 3, 2009
Yesterday I took Sophie in for a weight check and she lost weight again. So I took her to Milwaukee. We got here about midnight. They didn't admit her because she wasn't dehydrated, which is good. So today we went to see a dermatologist first. Her blood pressure was higher than last time. They talked to her cardiologist and he said it's ok but wants to see her in a few weeks. I also got to see her GI doctor. I got what I wanted....her tests to be bumped up. She has 3 tests next week. A barium swallow on Monday, video swallow on Tuesday, and the scope to her small intestine (don't know what it's called) on Wednesday. If I didn't go down when I did she would have had to wait until May 5th. Her GI doctor said that was too long of a wait so she pulled some strings and got us in sooner. Unfortunately, we are still in Milwaukee and will be here for about a week. :(
April 2, 2009
Things have been crazy around here. Not just with Sophia with everything. But we are hanging in there. Sophia has been sleeping a little better. We still don't know what happened. She did get her first tooth! Her doctor said it wasn't teething but I think it was. She was going to get admitted to Milwaukee but then she started sleeping so they thought whatever the problem was is done now. I am still struggling on feeding her. It seems like she has no interest in eating. As soon as the bottle gets in her mouth she starts beating it, meaning she doesn't want it. We have been at the doctor's office for weight checks at least twice a week. She did give me a scare last week when she dropped 5 oz in a couple days. Her next weight check she gained it back. Yesterday she only ate 9 oz of formula all day so we have to take her back and if she is losing again I will have to take her to Milwaukee for tests.
But on a good note, she did get her first tooth the other day. She has developed quite the personality. She loves to go places where there are people. She gets so excited when she sees someone new. She is a little show off when we go places, always squealing and smiling and her new thing... spitting. It looks like her little face is going to blow up. She likes to shoot her nook out of her mouth. I don't know what that is all about. She is a little bouncer also. She has been doing it for months and now I think she has a little problem because she does it in her sleep. It's amazing that when you see her you would never guess the problems she has. She is such a happy baby. (Which I am thankful for) I just hope it stays this way.
Taylen is doing so well in school. He has been having friends over lately which is good because it gives him something to do. I guess my house is the place to hang.
I am so proud of him. He is so understanding with all of this. He is so unselfish. It's amazing that he is so strong for being a 9 year old. He amazes me everyday. He is a very smart boy and I am soooo thankful to have him.
March 18, 2009
Sophie and I were at an appointment and I looked behind her hemangioma ear and noticed that is starting to split. It was oozing and looked painful. Off to the doctor we went. When she got weighed I noticed that she is losing weight! I knew she wasn't gaining and the doctors said that it was from the weaning process. When I called Milwaukee they didn't really like to hear she was losing weight. But now she is going through a phase of not eating that much... again. Her nurse called it a hunger strike. I thought that fit. Anyway, I didn't agree with what the family doctor said so I called Milwaukee and took pictures of her ear and sent it to them. Today it started to bleed. They seem to think that it's the hemangioma behind her ear that is making it "tear". I put ointment on it constantly. I have to wait a few days to see if it works. Also, if she continues to have her "hunger strike" then I will take her in on Friday to do a weight check and let Milwaukee know. Today she ate more than the last couple days so I am hoping it will be over soon. We both need sleep!!!!
March 16, 2009
I got her results from her MRI/MRA today. There hasn't been any significant changes, just a few small ones. Her carotid artery has narrowed even more. So she has to get another MRI in a few months. That was the only major change. Her doctor says we can still continue weaning her off the steroids. Her blood pressure is a little too high so she thinks it's a good idea. Her hemangioma around her eye hasn't gotten any bigger so that's great news!
March 9, 2009
Today was Sophia's 6 month check up. She got weighed and noticed that she hasn't gained weight in over a month. She has only grown an inch in about 3 months. We need to let her doctor know this Friday when we go to Milwaukee. She will have her MRI/MRA this Friday of her head, neck and chest.
Also, I received a phone call today from her GI doctor. They lost some notes from her ENT doctor about her scope and now they want to run some tests on Sophia. That would require a 2 night stay. They are going to do one test one day and then the second test the next day. The second one requires putting her under anesthetics and looking at her stomach and small intestines. I will know more when the time comes. They are thinking about doing in in a couple weeks. I am trying to get in on Monday, but chances are I won't.
March 8, 2009
(Steph) I apologize for not updating this web page for a while. It has been busy around here, and sickness has been spreading too. So, here is the most recent update:
Sophia went to Milwaukee on February 25th. They wanted to see if she had any side effects from weaning. So far so good. Not much news from them. Next Friday is her MRI/MRA so we should have more answers.
She also saw her eye doctor yesterday. He said she is doing great. Her left eye lid is still droopy but it's getting a lot better. Now we don't have to see him for another 2 months!
January 21, 2009
Today Sophia had her throat checked with a scope. The doctor couldn't find the lump. He seemed to think it was down further. He only checked down to her vocal chords. He did find a couple more spots of hemangiomas in her throat. It didn't cause too much of a concern because they weren't raised. Basically we wait and see. If she doesn't start eating better we have to go to her family doctor to find out what to do. Also, she will be going to a chiropractor to see what he can do. Hopefully that will help.
January 17, 2009
Sophia went to Milwaukee to see a GI doctor and her dermatologist. First, was her GI appointment. (Sophia has been spitting up all day and not eating well) While the doctor was asking questions she took a look at Sophia's throat. When Sophia gagged she saw a lump in her throat the size of my pinky nail. When she would gag the lump would move to the top and go back down. She was talking about doing all of these tests on Sophia. They would see if liquids are going into her lungs. If that's the case then she would have to be fed through a feeding tube. First she said that she would have to talk to her dermatologist to see if it's a hemangioma in her throat.
Next was her dermatology appointment. The doctor said that she spoke with the GI doc and said that they are going to hold off on the tests because Sophia would have to be sedated. Before they do that, she wants Sophia to see an ear/nose/throat doctor. They will put a camera down her throat to see if there are hemangiomas present. If there are, they will continue with the other tests. They also decided to hold off on weaning Sophia from steroids until they find out what the problem is. So we are off to Milwaukee next week to see what's going on. Please pray for Sophia.
December 22, 2008
Sophia's eye appointment went very well. The doctor said that I don't need to patch her eye anymore. He was very pleased with her progress. I got my bandage off my finger today and just about gagged when I saw it. I need to have a bandage on it for another two weeks and a splint at night for a month.
December 21, 2008
Surgery went well for me, and I'm healing nicely. Sophia had her MRI/MRA of her head, neck, and chest this past week in Milwaukee. The good news is that her heart is okay, and she doesn't need surgery at this point. They have to keep an eye on her aortic arch because of the kink. They found the missing artery that goes from her heart to her arms and legs, it was not where it was supposed to be. Her brain has her doctor worried now that she has another artery that's narrowed. It's on the left side, so now the arteries that supply the blood to her brain on the left side are narrowed so she will have to be put on aspirin to try to prevent her having a stroke. She will continue to get MRI/MRA's every three months. Tomorrow she has an eye appointment where they are going to dilate her eyes and check her vision.
December 17th
Sophia had her MRI/MRA of her brain, neck, and heart. She woke up from the anesthetics well. So that was good. It was hard for me to think of her like that and hooked up to a ventilator. After the tests we went to see her dermatologist. She wants to wean Sophia off of her steroids to see what happens. I'm hoping by March she will be off of steroids for good. We have to go back to see her doctor next month sometime. They also took her blood pressure and that was normal. So I think we are in the clear on that little problem. They had to take blood to check her thyroid and for the genetics test. That was a pain...for Sophia. They got enough blood for the thyroid test, but not enough for the genetics so they had to try both arms. They still didn't get enough blood. The poor peanut had a rough day.
December 9, 2008
Sophia had a GI appointment today. They didn't do anything. They told us to go to Milwaukee for a GI doctor. So she made an appointment for us for when we are there. She did bring up something interesting. She noticed isn't getting much longer. She wants her thyroid and platelets checked. So I am sure that will be done when we are in Milwaukee next week
Also, I am having surgery tomorrow in Duluth on my hand. I will keep updating, and thank you again for the overwhelming turnout at the benefit this weekend! :)
December 8, 2008
I would like to say THANK YOU FOR EVERYTHING! Thank you for your support for Sophia. The benefit was AMAZING!!! I cannot explain how grateful we are. Adam did a phenomenal job putting everything together. It was awesome!
December 2, 2008
I am SO excited for the benefit on Saturday! It sounds like I will get to see a lot of my family and friends. I don't have much to update you on (which is good): Sophia has a GI doctors appointment on December 9th, and I have surgery on the December 10th on my left hand again. The doctor is going to add some skin to my pointer finger so I can extend it more. I will update you after our appointments!
November 25, 2008
I (Stephanie) just wanted to share that Trish has spent a lot of time looking up medical terms online and finding out exactly what the current research says. So, the medical professionals have now named it "PHACE Disease" (dropping the "S"). Here is what Sophia has so far:
P- Posterior Fossa- N/A
H - Hemangioma- Left side of her head, left eye, left ear, mouth, throat and the back of her neck.
A - Arterial- narrowing of the left carotid artery, middle cerebral artery, posterior cerebral artery, superior cerebral artery, missing an artery in the left side of the brain, blood vessels don't go where they are supposed to, right posterior communicating artery is growing on the left side. Further tests will confirm the rest.
C - Cardiac- coarctation of the aortic arch (narrowing), a twist and kink of the aortic arch, mild thickening of left ventricle, peripheral pulmonic stenosis (the right or left pulmonary artery is narrowed.), missing her Further tests will confirm the rest.
E - Eye- Hemangioma around her eye possibly cutting off the optic nerve.
November 18, 2008
Taylen doesn't need his tonsils out at this point. We have to try a few things. He has to take his inhaler 2-3 times a day and if that doesn't work he will need to see a lung doctor, and if that still doesn't work then we have to go back to see if they will take them. They had to put a camera down up his nose down to the back of his throat. He wasn't too thrilled about that but I calmed him down.
Today Sophia got her blood pressure checked and it was normal. Her doctor switched her medication to Prilosec. Hopefully that will calm her down. She has been screaming most of the day lately and has barely eaten ANYTHING! I hate to see her in pain and I can't do anything about it. We should know in a few days if that works and if it doesn't than I don't know what to do. I can't let her go on like this, but if she continues to not eat, we might have to go to milwaukee to see a GI doc and a neurologist in the near future.
November 17, 2008
Today we saw Sophia's eye doctor and he said that she is making great progress. She is trying to use her left eye more. I am having problems with putting a patch on her eye though. Sometimes it leaves a mark around her eye from the sticky part of the patch, but her doctor gave me some tips on how to avoid that. So that was good news...for once!
Sophie has been fussing ALOT! I've tried everything I can think of to calm her down. I needed a sitter on Friday so I brought her to Taylen's grandma Rita. She fussed the whole time there, and she fussed ALOT on Sunday. I didn't know what to do so I called a mom who's daughter has PHACE and she gave me some tips. When I had time on Sunday I e-mailed her nurse from Milwaukee. She called me today to help me out. Tomorrow we have to see our family doctor to discuss changing one of her medications to help with heartburn. The nurse thinks that might be the problem since she says that steroids will cause heartburn. She also wants her blood pressure to be checked. Sophia will get her shots too... at least the ones she can get.
November 12, 2008
We went to see her doctor in Milwaukee today. She brought Sophia's MRI/MRA down to Texas to have some more doctors look at it, and we do have some more information about her brain. Not only is her carotid artery narrow, there are two more arteries that are narrow. They are all on the left side of her brain. Last time it was just her blood vessels in her circle of Willis that were mapped different. Now there are more blood vessels that are mapped different too. It's hard to explain. She is also missing an artery in her brain, on the left side. I guess that is normal for PHACES patients.
She has been waking up at night and her hands are really cold and kind of purplish colored so I asked the doctor about that. She said that a lot of PHACES parents have been asking about it. She told me to take her temperature and if it is below a certain number to just warm her up as best I can and if it is really low, take her to the ER. Because of her heart problems they take her blood pressure. This time they noticed that her blood pressure was high. So now we have to get that checked every two weeks with our family doctor.
Her birthmark is still growing. Since our last visit three weeks ago it has grown and inch longer and a half an inch taller. But, her eye is open more than what it was so we will take it. That is all I have for now. Her next set of tests are on December 17th. I am not looking forward to that. I just hope they will have some good news for once.
Taylen also goes in to see the doctor this week - to see if he needs his tonsils out. :(
November 3, 2008
On Monday she went to see the eye doctor. He said that there is progress in her eye and he would like to see it open more. We knew that. On Tuesday she saw her doctor in Minneapolis. It was just a check up to see how she is doing on steroids. So far so good. She is a bit crabby from them but so far we are handling it. We also talked about other options if the steroids don't work like they are supposed to. So far there is a lot of progress in her eye but her birthmark is staying the same size. It is getting darker and puffier, but the doctors say that around 5-6 months of age is when it stops going or goes down. Taylen skipped school to go with us and he loved the place. He wants to go back again. He got to be on TV! It was a channel for the children's hospitals to watch. It was such a funny show. We have to go back to Milwaukee on the 12th and she has more tests on December 17th. We go to her eye doctor on the 17th
October 24, 2008
I had surgery today on my ring finger, middle finger, and thumb on my right hand to remove shrapnel and to clean up a scar on my thumb. It is a little painful, but it went well. THANK YOU TAYLEN FOR BEING A GREAT BIG BROTHER TO SOPHIA, AND BEING A GOOD SPORT THROUGHOUT ALL OF THIS... MOMMA LOVES YOU! YOU ARE THE BEST SON IN THE WHOLE WIDE WORLD!!! Sophia made her T. V. debut tonight on WQOW Channel 18 out of Eau Claire. Her story made both the 5:00 and the 6:00 news. They gave information on her condition, and the benefit. Here is the link to Sophia's Story. Here is a direct link to the news video.
October 22, 2008
Sophie and I went to Milwaukee for a second opinion today. We arrived at 9:00 last night and stayed at a hotel in Milwaukee. (Thanks to Carrie for driving me at the last minute. Also, to Adam and Steph for trying to do what they could to get me there and in a hotel.) On Wednesday morning at 10:00 we had an appointment with a dermatologist at the Children's Hospital of Wisconsin in Milwaukee. The doctors explained more about her immune system, or lack of one because of the steroids. People have to wash their hands before holding her. No one is allowed at the house if they are sick. If the kids are sick, they are not allowed near her. Sophia already has caught the cold that I have. She will have more tests to see how strong her immune system is. Because of this, Sophia cannot have any live vaccinations, and the regular ones will not fully work. If she is around anyone who has been in contact with chickenpox, she needs to go directly to the emergency room or she could die.
The doctor is very worried about her eye, and wants to continue steroids for 8 - 10 weeks, and we are to keep a close watch to see if she is gaining strength in her left eye, and if the hemangioma (birthmark) starts going away then she can open her eye more. The steroids are supposed to help her gain strength and vision in her eye. I finally got to talk to a cardiologist! They redid her echo, and come to find out, her aortic arch is narrow near her heart, and they found a twist in her arch. Because of the twist, it has a kink in it. There are supposed to be three main arteries that supply the blood to your arms and legs. He was only able to find two of Sophie's. There are some other little problems like the hole between her ventricle is normal for PHACES patients. Some of her veins are smaller than normal too. He would like to do further tests such as an MRI on her heart, but that includes her being under anesthetics and a ventilator.
I also signed Sophia and I for a research study about the genetics for PHACES, and hopefully they can find out if the disease is hereditary. Sophie made a new friend! Her name is Amy, and she is one of the dermatologists. She was walking Sophie up and down the halls, and Amy got her to calm down even though she couldn't eat before her ecco! When she came back in the room to put Sophie on the examination table, Sophie would not let Amy out of her sight! Since this hospital deals with more cases like Sophie's, we are going to continue seeing this team of doctors.
Monday we are going to the eye doctor in Duluth, and on Tuesday we will be in Minneapolis again (Taylen gets to come with this time). On November 12, we will be going back to the doctors in Milwaukee, and reunite Soapy with Amy! :-)
October 19, 2008
I took Sophia into the E. R. last night because Aunt Carrie was watching her and noticed white spots in her mouth... she now has thrush. The doctor told me that this is probably caused by the medications she is taking right now. When it rains, it pours!
October 18, 2008
We found earlier this week that Sophia's birthmark has now spread to her throat. She started her steroids on Monday, and it's starting to clear up the mark on her head. She is also opening her left eye more! She smiling more now, and is a little happier. Most importantly, she is asleep more now... mom will be less crabby! I am now sick, but hopefully that will be over soon. The next appointment is in Milwaukee on Wednesday, October 22nd. My hand surgery will be on Friday, October 24th. Sophia will see the eye doctor again on Monday, October 27th in Duluth, and the next day we are going to see her awesome birthmark doctor at the Children's Hospital in Minneapolis... we always have an appointment to be at!
October 15, 2008
Sophie was diagnosed with PHACES on October 6th. She was born on September 2nd at 5 lbs 11 oz. I had a c-section with her because I had one with my son. When I first saw her she had a little bruise on her head and I noticed she had a hard time opening her left eye. They said the bruise was from the delivery so I didn't show too much concern until a few days later when it looked like a rash was starting. At one week old I had to take her into the doctor for throwing up and I asked what was growing on her head and the doctor didn't like what she saw so she referred me to a dermatologist and an eye doctor. So we had to wait a few weeks to get in. In the mean time it grew very quickly.
By the time of her 2 week check up it grew on her ear and in her mouth. So we went to the eye doctor and he told us to go directly to dermatology and when we did that he was on the phone to the children's hospital and said she needs to be seen asap. Dermatology told us it was a port wine stain and talked to us about laser treatments. So we went to the eye doctor later and he said she still has her vision and he wanted to see her in two weeks.
We went to the children's hospital a week later and did an MRI, MRA and an echo. The doctor diagnosed her with PHACES. He told us that it is growing around her eye and it might hit the optic nerve soon as it grows. Also she here blood vessels in her brain aren't formed right. I don't know how to explain it but she doesn't have a circle of Willis. She is missing the top part on her right side. The artery on the left side, where you can feel your pulse, is very thin. She also has narrowing in her aortic arch and a heart murmur.
She has never had a stroke or anything like that, thank God, but she has to go in for repeat tests. The doctor wanted to wait on steroids. So we just took her to the children's hospital because she is fussy all the time and she isn't eating that well. While we were there her eye looked really bad. She could barely open it and the color changed so they looked at that too. Her doctor said that we should start steroids in a few days. She has to see the eye doctor again tomorrow. They changed her formula to help with the vomiting. So far that's all. I will have updates soon!
