Ali had her second physical therapy appointment today. She has been limping pretty bad the last few days. I am not sure if she has over did it the last few days playing or maybe all the high and low pressure weather systems that have come through are the issue. At her PT appointment today her PT Andi said that she is seeing improvement in what Ali is willing to try and her abilities doing the skills. We did have only one "fit" today at the appointment. Her PT wanted her to stand on this thing that looks like if you cut a exercise ball cut in half. Ali would not do it. She in fact crawled under a table and proceeded to eat a piece of dirt off the floor while screaming NO! I believe that was her showing her control over the situation. "You can't make me do it and in fact I am leaving and I am going to put dirt in my mouth and scream to show you." After a while I got her to come out and finish her treatments. She just wants to do what she wants to do, like most two year olds. Ali also has her personal stress going on. I have not been primary in caring for her these past couple weeks. She has been doing a ton of visits at peoples homes and being baby sat a lot, while I am on my final stretch of bed-rest. I have been trying to keep a consistent schedule for her but it is hard.
Tomorrow Justin and my Mother-in-law are talking Ali to her appointment to get her first round of medication shots at the Children's Hospital. I hope it goes well. I will not be able to go to the appointment. The walk from the parking garage into the hospital is way more then I am allowed to walk at this point. I am worried about having to give her the shots but now with me not going I will not be trained in it. Also the type of medications they are it is not safe for me to handle with-out rubber gloves on while I am expecting and then after nursing. I have not remembered to have Justin pick any up at the store either at this point. Feeling nervously hopeful for our future.
Tuesday, April 3, 2012
Friday, March 23, 2012
Good new at a doctors appointment
Justin took Ali to her first Ophthalmology appointment today. Justin said she cried about the eye drops but they found that even with being ANA positive her eyes are ok. She will have to go back in 3 month to get checked again. We are happy with the good news. We have a new challenge this week I am no on bed rest so Justin has to take over her appointments.
Update: We noticed some of the swelling has gone down in her ankles and her knees. She also has been willing to do things like walking down steps while we hold her hand.
Update: We noticed some of the swelling has gone down in her ankles and her knees. She also has been willing to do things like walking down steps while we hold her hand.
Wednesday, March 21, 2012
Joint Injections
Yesterday Ali had joint injections for the first time.
My Mom and I went to this appointment because it was very early in the morning and Justin had worked the night before.
The injections where done at Children's Hospital. It took them a long time to get her IV in. They stuck the needle in and just dug for a good two minutes before they decided to call for help. Before they put the needle in they tied off her arm so it was turning purple before they quit. Poor thing was screaming and crying so bad her eyes went blood shot and she was shaking. I was holding her face so she could not see what they where doing and try to get away. Then they called in the "IV Team" This nurse arrived with a side bag looking thing she pulled out this red light turned off the lights in the room. Held it up to her arm and popped the IV right in like it was nothing. Before we went in I talked to one of the doctors and told her that I felt Ali would be more willing to go to sleep if I held her while they did it and if they did not take her shoes off until she was asleep. (Do not ever take away Ali's shoes or her Mama that sets her off like nothing else.)
Then I carried her to the procedure room this room was huge. They had me hold her while they went over the information regarding their plans the day. They then gave her the medication in the IV to put her to sleep. I could hear her heart rate on the monitor slow down which kind of freaked me out. Then her eyes started moving around but they told me to expect that. Then she went limp in my arms and her mouth fell open. They said she was asleep and to lay her down on the table. I burst into tears at that point. I hugged and kissed her goodbye. They promised to take care of her as they walked me out.
They took my Mom and me to a private area off the main waiting room. They had a nurse from Rheumatology talk to us. She said she called our health insurance and they said they would not cover one of the medications that they want to use in treatments the Methotrexlate. She asked if I could pay it myself if the price was low enough. She thought with as low of a dose as she would take it would be about twenty dollars a month. I said yes, please call and check the price for me. She then told me what to expect from the medications. The other medication they want to us to give is Embrel. She told me to check the website and they offer programs for help with the cost. ( I did and got her signed up the first 6 months will be free then its only 10 per month after)
We will have to give Ali 3 shots every week. That will last for a year. They hope these medicines will help enough that she will not have to be on the pain medication. The nurse said that next week they will call and set up a time for me to come in a learn how to give Ali the shots myself. She said the drugs have to be refrigerated but the company gives you a little cooler and a ice pack so when you have to take it some place. So I will have to have a prescription for both types of needles used, numbing creams. then the drugs themselves. Also I have to wear rubber gloves these types of drugs are not safe for the baby now or when I am nursing. I will plan on my Mom and Justin going to the learn how to give the shots appointments so we have back-up's in place if she is due for a shot and I am unable to do it. After she finished talking to us I went to the cafeteria and got a couple bottles of water and walked around for a bit. I was only back for about 5 minutes before the doctor who did the procedure came to talk to us. He said he got the shots in but he did not know how to say it the way he wanted to. He said that her Arthritis is very bad and it was not until he was in there with the Ultra-sound that he saw all the inflammation and the damage already that had been done.
He then walked us back to where Ali was. She barely had her eyes open. I could tell she could not focus her eyes yet. I just kissed her cheek and told her mommy was there. So even tho she was not awake she could feel me with her. I held her hand and talked quietly to her. After a bit she was able to see a bit better and was trying to talk she whispered "Mama". I could tell her mouth was very dry from fasting before everything they sleeping with her mouth open. I gave her some juice it took her a couple tries to even be able to get any juice in the straw. I could tell when she got some juice her mouth felt much better. After a bit I gave her a tiny bite of crackers and she was able to eat some. After a few more minutes she started to complain about her blood pressure cuff. She hates those so we knew she was waking more. When she asked for her shoes the nurse said 'OK I can tell she is waking up" So we packed her up to leave. She did much better being sedated with these drugs instead of what they used before. She was not screaming or crying.
Ali ended up puking in the car coming home. They said that might happen. They asked for one of us to sit in the back with her to keep a eye on her. So my mom was there and helped to clean Ali up. It was mostly juice so it was smelly but not too messy.
Ali then went to sleep in the car. I carried her into the house and changed her clothes. I thought she went to sleep but she was just feeling "drunk" still. I got her out of her crib and took her to my room and laid down with her. She was being very silly laughing and kicking Justin. I was so tired I put her back in bed and took a nap myself. Ali slept for 3 hours and woke up in a grouchy mood. I told Justin Ali sobered up and she was hung over now. She ate crackers and had more juice and just wanted "mama" and "mimi" (mickey mouse clubhouse).
Today Ali seems sore and a but grouchy but over all pretty good she has bruises all over her today poor thing. I need to pick up some baby oil to get all the marker and adhesive marks off of her. I could not give her a bath for 24 hours after the shots to help keep them clean. So it is bath night.
My Mom and I went to this appointment because it was very early in the morning and Justin had worked the night before.
The injections where done at Children's Hospital. It took them a long time to get her IV in. They stuck the needle in and just dug for a good two minutes before they decided to call for help. Before they put the needle in they tied off her arm so it was turning purple before they quit. Poor thing was screaming and crying so bad her eyes went blood shot and she was shaking. I was holding her face so she could not see what they where doing and try to get away. Then they called in the "IV Team" This nurse arrived with a side bag looking thing she pulled out this red light turned off the lights in the room. Held it up to her arm and popped the IV right in like it was nothing. Before we went in I talked to one of the doctors and told her that I felt Ali would be more willing to go to sleep if I held her while they did it and if they did not take her shoes off until she was asleep. (Do not ever take away Ali's shoes or her Mama that sets her off like nothing else.)
Then I carried her to the procedure room this room was huge. They had me hold her while they went over the information regarding their plans the day. They then gave her the medication in the IV to put her to sleep. I could hear her heart rate on the monitor slow down which kind of freaked me out. Then her eyes started moving around but they told me to expect that. Then she went limp in my arms and her mouth fell open. They said she was asleep and to lay her down on the table. I burst into tears at that point. I hugged and kissed her goodbye. They promised to take care of her as they walked me out.
They took my Mom and me to a private area off the main waiting room. They had a nurse from Rheumatology talk to us. She said she called our health insurance and they said they would not cover one of the medications that they want to use in treatments the Methotrexlate. She asked if I could pay it myself if the price was low enough. She thought with as low of a dose as she would take it would be about twenty dollars a month. I said yes, please call and check the price for me. She then told me what to expect from the medications. The other medication they want to us to give is Embrel. She told me to check the website and they offer programs for help with the cost. ( I did and got her signed up the first 6 months will be free then its only 10 per month after)
We will have to give Ali 3 shots every week. That will last for a year. They hope these medicines will help enough that she will not have to be on the pain medication. The nurse said that next week they will call and set up a time for me to come in a learn how to give Ali the shots myself. She said the drugs have to be refrigerated but the company gives you a little cooler and a ice pack so when you have to take it some place. So I will have to have a prescription for both types of needles used, numbing creams. then the drugs themselves. Also I have to wear rubber gloves these types of drugs are not safe for the baby now or when I am nursing. I will plan on my Mom and Justin going to the learn how to give the shots appointments so we have back-up's in place if she is due for a shot and I am unable to do it. After she finished talking to us I went to the cafeteria and got a couple bottles of water and walked around for a bit. I was only back for about 5 minutes before the doctor who did the procedure came to talk to us. He said he got the shots in but he did not know how to say it the way he wanted to. He said that her Arthritis is very bad and it was not until he was in there with the Ultra-sound that he saw all the inflammation and the damage already that had been done.
He then walked us back to where Ali was. She barely had her eyes open. I could tell she could not focus her eyes yet. I just kissed her cheek and told her mommy was there. So even tho she was not awake she could feel me with her. I held her hand and talked quietly to her. After a bit she was able to see a bit better and was trying to talk she whispered "Mama". I could tell her mouth was very dry from fasting before everything they sleeping with her mouth open. I gave her some juice it took her a couple tries to even be able to get any juice in the straw. I could tell when she got some juice her mouth felt much better. After a bit I gave her a tiny bite of crackers and she was able to eat some. After a few more minutes she started to complain about her blood pressure cuff. She hates those so we knew she was waking more. When she asked for her shoes the nurse said 'OK I can tell she is waking up" So we packed her up to leave. She did much better being sedated with these drugs instead of what they used before. She was not screaming or crying.
Ali ended up puking in the car coming home. They said that might happen. They asked for one of us to sit in the back with her to keep a eye on her. So my mom was there and helped to clean Ali up. It was mostly juice so it was smelly but not too messy.
Ali then went to sleep in the car. I carried her into the house and changed her clothes. I thought she went to sleep but she was just feeling "drunk" still. I got her out of her crib and took her to my room and laid down with her. She was being very silly laughing and kicking Justin. I was so tired I put her back in bed and took a nap myself. Ali slept for 3 hours and woke up in a grouchy mood. I told Justin Ali sobered up and she was hung over now. She ate crackers and had more juice and just wanted "mama" and "mimi" (mickey mouse clubhouse).
Today Ali seems sore and a but grouchy but over all pretty good she has bruises all over her today poor thing. I need to pick up some baby oil to get all the marker and adhesive marks off of her. I could not give her a bath for 24 hours after the shots to help keep them clean. So it is bath night.
Thursday, March 15, 2012
2 appointments today back to back
Boy am I tired after the appointments today. We left the house to get to the first at 915. We arrived in the parking garage at 940. We had to walk and walk as normal I timed it today we did not arrive in the Rheumatology office until 1000! I knew it was a long walk.
So her doctor told us a few things today that are not good things. The first being that it is worse then she originally thought. She has it in both ankles, both knees, both elbows, two toes and a wrist. They will do the joint injections next week in all of those areas.
The other not great news is that she will have to start 2 types of medication still the Methotrexlate and Embrel the Embrel is a once a week shot that I will have to give her. In 2 weeks I am going to have to come in a learn how to give Ali the shots. I am not happy about it.
I asked about her not growing and in fact loosing weight and the doctor said that when your body is giving it's self the inflammation that it is using its calories for that and not for growing and until we have it under control to expect her to not grow and probably loose weight. Also hearing the doctor say the words they is no cure for this just the hope of remission making her symptom free.
Right after that appointment I had to get across the street to the other side of the Children's campus for an appointment with the Orthopedic doctor. I asked the Rheumatology office workers to call over and say we were leaving there and on our way. I had to do the very long walk back to the car and move it across the street to the other lot.
I walked into that waiting room in the Orthopedic department and there where at least 50 people in there! We saw the doctor after awhile and he felt that the fracture with it not being displaced and not appearing to be new. She is also acting fine that we did not have to do a cast or anything to treat it. My brain always just wants a nap after do all of this.
So her doctor told us a few things today that are not good things. The first being that it is worse then she originally thought. She has it in both ankles, both knees, both elbows, two toes and a wrist. They will do the joint injections next week in all of those areas.
The other not great news is that she will have to start 2 types of medication still the Methotrexlate and Embrel the Embrel is a once a week shot that I will have to give her. In 2 weeks I am going to have to come in a learn how to give Ali the shots. I am not happy about it.
I asked about her not growing and in fact loosing weight and the doctor said that when your body is giving it's self the inflammation that it is using its calories for that and not for growing and until we have it under control to expect her to not grow and probably loose weight. Also hearing the doctor say the words they is no cure for this just the hope of remission making her symptom free.
Right after that appointment I had to get across the street to the other side of the Children's campus for an appointment with the Orthopedic doctor. I asked the Rheumatology office workers to call over and say we were leaving there and on our way. I had to do the very long walk back to the car and move it across the street to the other lot.
I walked into that waiting room in the Orthopedic department and there where at least 50 people in there! We saw the doctor after awhile and he felt that the fracture with it not being displaced and not appearing to be new. She is also acting fine that we did not have to do a cast or anything to treat it. My brain always just wants a nap after do all of this.
Wednesday, March 14, 2012
2 year check-up
Ali had her 2 year check-up today. She is 24lbs and 34 in. Those are the same stats as when she was 18 months. Developmentally she is right on track. I am concerned about the fact that Ali has lost 2 lbs in the last 3 weeks. The JRA can cause growth restrictions so I am wondering if that is what is going on. Her doctor said he would like to do a weight and height measurement when I have the baby in a couple weeks and bring him in.
Monday, March 12, 2012
PT Evaluation
So today was another appointment....Justin was going to take her to it but he had a car accident last night he hit a deer. So Justin's truck was not drive-able today. So I called my Mom and say was able to come and work for me so I could take Ali all at the last minute. (Thanks again Mom)
We checked in and it was nice and quiet when we arrived. We pretty soon went back and she was evaluated in the areas of motor skills. They watched her play to check her fine motor skills. Roll a ball. They checked her flexibly in her joints. She walk up stairs but is unable to walk down stairs. She can not stand on one foot at a time. She does not have the ability to run or jump either. So they felt she was being in three areas of motor skills. Her fine motor skills are fine as I thought they were. They want to see her once a week for the next 6 months. Our goals are for her to be able to run, gain flexibility, strength in her joints and muscles.
I also talked to her Rheumatologist again today. She had concerns about the fracture in her foot so she called her Orthopedic doctor and he wants to see her this Thursday to make sure she does not need treatment for her fracture.
Ali has another appointment this Wednesday for her 2 year check-up.
Overall I am feeling tired I am sure it does not help I did not get to bed last night until midnight then Justin came home at 230 and woke me I did not go back to sleep until 430 then I was up at 7. All of this after the time change and being eight months pregnant. It is a wonder I can think straight at all.
We checked in and it was nice and quiet when we arrived. We pretty soon went back and she was evaluated in the areas of motor skills. They watched her play to check her fine motor skills. Roll a ball. They checked her flexibly in her joints. She walk up stairs but is unable to walk down stairs. She can not stand on one foot at a time. She does not have the ability to run or jump either. So they felt she was being in three areas of motor skills. Her fine motor skills are fine as I thought they were. They want to see her once a week for the next 6 months. Our goals are for her to be able to run, gain flexibility, strength in her joints and muscles.
I also talked to her Rheumatologist again today. She had concerns about the fracture in her foot so she called her Orthopedic doctor and he wants to see her this Thursday to make sure she does not need treatment for her fracture.
Ali has another appointment this Wednesday for her 2 year check-up.
Overall I am feeling tired I am sure it does not help I did not get to bed last night until midnight then Justin came home at 230 and woke me I did not go back to sleep until 430 then I was up at 7. All of this after the time change and being eight months pregnant. It is a wonder I can think straight at all.
Thursday, March 8, 2012
MRI test
So yesterday was a very long day. Ali had a MRI test at the Children's Hospital. We arrived like any other appointment and waited as normal. They then took us back to a area that looked a lot like a triage area. They asked us a lot of questions then the doctor looked at Ali.
Ali was feeling upset about them looking in her mouth. They had to make sure she had no inflammation in her mouth are throat. The test had to be done with Ali sedated and sleeping. First they put numbing cream on both hand and gave her a oral sedative to make her relax for the IV to be put in. That medication took about 15 mins to work. I could tell when it kicked in Ali started looking glazed and her speech was slurred. The nurse then put in the IV. Ali only cried for a second I was singing to her and keeping her attention on me.
Once a MRI bay opened up they took her back. Justin went with her because with me being pregnant I was not allowed. The test took about a hour, during that time I went and found cell phone signal to send a couple texts to family and have a snack. I came back to the MRI triage and read for a bit waiting to the test to be over. It felt like time was crawling along. I would read for what felt like a long time and look up and only 5 minutes had passed.
Finally they came out from the test. The nurse said it took a ton on sedative to put her to sleep. Much more then a child who only weighs 25 lbs. (yes, Ali has lost weight in the last couple weeks. I do not know if it is from her fasting before her appointment or the pain meds working better and she is more active)
So Justin carried her out and she flopped into my arms and her head fell back. She opened her eyes and said "Mama" in a very slurred speech. She was flopping around and crawling around in her bed she was so very out of it. The nurse gave her apple juice and a can of Mt. Dew. Yes you read that right Mt. Dew they said all the caffeine helps the sedatives wear off. The nurse offered her a cracker and Ali grabbed it stuffed if in her mouth then drooled it down her face. She did not know up from down. I kept trying to hold Ali as she was crying for me but she was flopping and wiggling so much. The nurse suggested I strap her into her stroller with its 5 point harness so she would stop fighting and go back to sleep. We strapped her in and laid it back she tried to sit up a few times and gave up. We then headed home with instructions to let her sleep it off and only feed her when she was awake. When I put her in the car seat her put her blanket over her head then went to sleep. I put her shoulder pillow on to help hold her head but for most of the drive her head just hung forward. When we got her home I carried her up to her room she looked at me and went back to sleep.
Ali slept from about 4pm until about 8pm. I changed her diaper and put her into her PJ's. I then tried to get her to eat she ate a few bites but her speech was still slurred and she was having trouble sitting up in my lap. After she had half a juice box and half a apple slice and a few french fries she curled up on my lap and went back to sleep. I carried her back to bed. She then slept until about 945pm. I had already gone to bed so Justin went to check on her and she was asking for "mimi" her Minnie mouse doll. He gave it to her and she went back to sleep until 7am.
She ate a good breakfast today and lunch. She is napping now and is acting like her normal self.
Ali's doctor called this afternoon with the results of the MRI. It showed that she has a loss of fluid in her ankles and the tendons their. It also showed some issues in her knees. The test also showed a non-displaced fracture in her foot. Her doctor felt the disease is the cause of the fracture making her bones brittle. With the bones not being displaced they are not going to boot or cast it. We are going to see the doctor next week to do the shots in the joints and start on the rest of the medications.
Ali was feeling upset about them looking in her mouth. They had to make sure she had no inflammation in her mouth are throat. The test had to be done with Ali sedated and sleeping. First they put numbing cream on both hand and gave her a oral sedative to make her relax for the IV to be put in. That medication took about 15 mins to work. I could tell when it kicked in Ali started looking glazed and her speech was slurred. The nurse then put in the IV. Ali only cried for a second I was singing to her and keeping her attention on me.
Once a MRI bay opened up they took her back. Justin went with her because with me being pregnant I was not allowed. The test took about a hour, during that time I went and found cell phone signal to send a couple texts to family and have a snack. I came back to the MRI triage and read for a bit waiting to the test to be over. It felt like time was crawling along. I would read for what felt like a long time and look up and only 5 minutes had passed.
Finally they came out from the test. The nurse said it took a ton on sedative to put her to sleep. Much more then a child who only weighs 25 lbs. (yes, Ali has lost weight in the last couple weeks. I do not know if it is from her fasting before her appointment or the pain meds working better and she is more active)
So Justin carried her out and she flopped into my arms and her head fell back. She opened her eyes and said "Mama" in a very slurred speech. She was flopping around and crawling around in her bed she was so very out of it. The nurse gave her apple juice and a can of Mt. Dew. Yes you read that right Mt. Dew they said all the caffeine helps the sedatives wear off. The nurse offered her a cracker and Ali grabbed it stuffed if in her mouth then drooled it down her face. She did not know up from down. I kept trying to hold Ali as she was crying for me but she was flopping and wiggling so much. The nurse suggested I strap her into her stroller with its 5 point harness so she would stop fighting and go back to sleep. We strapped her in and laid it back she tried to sit up a few times and gave up. We then headed home with instructions to let her sleep it off and only feed her when she was awake. When I put her in the car seat her put her blanket over her head then went to sleep. I put her shoulder pillow on to help hold her head but for most of the drive her head just hung forward. When we got her home I carried her up to her room she looked at me and went back to sleep.
Ali slept from about 4pm until about 8pm. I changed her diaper and put her into her PJ's. I then tried to get her to eat she ate a few bites but her speech was still slurred and she was having trouble sitting up in my lap. After she had half a juice box and half a apple slice and a few french fries she curled up on my lap and went back to sleep. I carried her back to bed. She then slept until about 945pm. I had already gone to bed so Justin went to check on her and she was asking for "mimi" her Minnie mouse doll. He gave it to her and she went back to sleep until 7am.
She ate a good breakfast today and lunch. She is napping now and is acting like her normal self.
Ali's doctor called this afternoon with the results of the MRI. It showed that she has a loss of fluid in her ankles and the tendons their. It also showed some issues in her knees. The test also showed a non-displaced fracture in her foot. Her doctor felt the disease is the cause of the fracture making her bones brittle. With the bones not being displaced they are not going to boot or cast it. We are going to see the doctor next week to do the shots in the joints and start on the rest of the medications.
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