Oct 31, 2008

Trick or Treat

Brennan enjoying one of his "treats" and making his rounds.............

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Ayla collecting all of her candy

and stopping to smile for the camera!!!

Isn't she the cutest bunny you have ever seen?

Here is a little video!!

It was a successful Halloween night. I was not sure how Ayla would do but once again to my surprise, she had a great time. She even said "trick or treat to everyone" followed by a polite thank you! Once she learned that she would get candy from everyone, she was on board!! Of course she always got a little extra just because she is so darn cute!! We only took her down one street in our neighborhood and she did great except for when she saw someone dressed up a little scary. I then picked her up until the scary person passed. Every time she saw a duck, puppy, etc.. she would tell me "mommy duck quack quack"..or mommy there's a doggy...it was so cute! Brennan just tagged along watching everybody. He had on his little mechanic looking coveralls. I have had them for a while so I thought they would be cute for Halloween. My mom kept saying he was the UPS man..hehe. It was a good time but very cold so we didn't get to stay out too long!! I just hope that Ayla doesn't think that trick or treat is EVERY night!!
Ayla is still doing good. Brennan and I are fighting a cold and of course it couldn't come at a worse time. I am praying that Ayla does not get sick...enjoy the Halloween pics, oh and I posted a little video at the end of Ayla. I have a neat video feature on my camera(the only thing I like about it), and I was just seeing if I could post it and it worked!!

Oct 28, 2008

New medicine

Finally, after putting it off as long as we could, we started Ayla on her medicine (methotrexate) Saturday night. It was the worse day ever because I was just dreading giving it to her. You would think I was giving her poison. I just really never thought that we would have to resort to a second line medicine. Seven months ago when this all started, I thought that we would get this under control and it would be no big deal. Now, I really have no other options and if it will help her and make her feel better then I know it is the right thing to do. It still upsets me and that vial of medicine is just a reminder that I do have a child with a chronic illness. It is just so frustrating.
Saturday evening before we gave her the medicine we took her out for a little bit. John had to end up carrying her all evening because she was complaining about her ankle hurting her and she would not walk on it. Since we have decreased her naproxen dose one week ago, she has complained every day about her ankle hurting. The methotrexate usually takes about three to four weeks before any results are seen, so hopefully this will help her ankle . If not, she will probably have to have another joint injection to her ankle. Anyway....

We gave her the medicine on Saturday night around 9:15 pm.. we mixed it with a little bit of juice and she drank it with a straw out of a little medicine cup.. everything went great, we kept her up for another hour to make sure she had no reactions and then she went to bed. I was a nervous wreck all night and did not sleep at all. I was sick to my stomach because I was so stressed out about everything. Ayla started crying in her sleep around 1am, I looked in at her but she was still sleeping so I did not get her up. I am guessing that her stomach was upset from the medicine as this is the most frequent side effect and that is why they tell you to give it before they go to bed. She eventually stopped crying and slept the rest of the night without a problem. She woke up Sunday morning crying around like usual and was not interested in eating. As the day went on, she eventually became more active and by evening she was running around playing.

Today is Tuesday and as far the medicine goes, she is doing great. She is still complaining about her ankle but I have confidence that it will get better as the medicine starts to work. I know that she is in God's hands and that he will take care of her. I pray every night that he wrap his arms around her while she sleeps. It is so nice to know that she is surrounded by prayer from everyone. I have been reading a children's bible to her every night before she goes to bed and I always tell her how much Jesus loves her. Even though she doesn't understand, out of all her books, she loves this one and she sits so contently listening to every word. We always say a prayer and then end the night singing Jesus loves me, Oh how I love Jesus and My God is so Big....

My God is so big, so strong and so mighty there is nothing my God can not do for you~!

I know there is nothing that our God can not do and I know that he is watching over Ayla and like Mammaw said to me today, He will work this out for her in his due time. Thank you Mammaw for all of your prayers!

Oct 23, 2008

Eye appointment

Yesterday we had an eye appointment to make sure that Ayla's eyes are still not affected by the arthritis. I may have mentioned this before, but with the type of arthritis that she has (extended pauci-articular) she is susceptible to developing inflammation in the eye as well as the joints. If eye involvement is going to occur, most children will develop eye disease within 7 years of the onset of arthritis. The term for the eye inflammation is called uveitis. The inflammation rarely causes any symptoms such as blurry vision, pink eye, squinting , or pain. Since few or no symptoms are recognized, her eyes must be checked on a regular basis (every 6 months) before the eye is damaged and causes changes in vision. The damage has potential to cause cataracts, increased pressure in the eye, or serious damage to the iris. To check for this, a slit -lamp exam has to be done. This consists of putting your chin and forehead onto the back of a microscope, while the Dr. looks in your eyes through the other side. Of course Ayla did not go for this so we had three people holding her down . One person was holding her head, one was holding her eyes open and I was holding her arms and legs still. Thank goodness it did not take long and everything checked out okay. I am hoping that as time passes, this will get a little bit easier. At least we have another 6 months before we have to do this again.

Since Ayla had a bad afternoon, I decided to take her to Target so she could get out for a little bit. Of course we went to the toy section and of course she went straight to the baby dolls. She was so funny, there was this wooden baby center there that she absolutely loved. It was like a changing table, a bathtub, highchair and bed all in one.... she kept saying she had to put her baby to bed and I could not get her to leave. The other funny thing was that she picked out this little tiny baby no bigger than 5 inches I would say and she was just holding it and patting it and putting it in the bed, I could not get her attention away from this baby care center


she saw THE CHAIR. Okay there was this chair beside the baby center that caught her eye. It was a saloon chair for baby dolls. It was little, and it came with a hair dryer and curlers. For some reason she was fascinated with this chair. She started carrying this chair everywhere, she would sit in it and then she would put her baby in it. Well this went on for probably around 30 minutes because we were waiting for Daddy to meet us. When John got there I told him about the chair and the baby etc.....I told him I had never seen her play with a toy like this before. So....... we tried and tried to get her to leave the chair behind because after all we had spent most of our time at target in the toy section. So after a brief discussion, I decided that she did not need this chair and we would just distract her and leave the chair behind. Okay this did not work, she started sobbing and she would absolutely not leave her chair. So of course daddy said oh just get it for her. There was not a price on it so we thought it could not be that much and besides Ayla hardly ever asks or cries for anything when we go shopping. So just picture us walking through target, Ayla with her chair in one hand and her little tiny 5 inch baby in the other. She would not let me hold the chair or put the chair in the buggy. She lugged that thing through target and everyone was laughing at her. Of course I happened to have my camera in my purse and I had to take a picture. It was so funny. So needless to say Ayla got her $23.00 plastic baby doll hair styling, saloon type chair . Enjoy the pictures!!

Oct 21, 2008

It's Official, Brennan is ONE!

Well, now I can say I have a two year old and a one year old. Brennan's first birthday was on October 18th. I can't believe it has been a year already. We had a small celebration on Sunday with family and friends. It was nice to share his first birthday with the people who mean the most to us. Our friends from Indiana came in and surprised us by showing up at the party. It was awesome to see them and spend some time with them. Brennan had a good time, of course he had no idea what all of the fuss was about. He liked his cake but unfortunately he did not like the very cute birthday hat that I thought he must have. Oh well, I did get one picture with it half way on..hehe...
This first year with Brennan has been a joy. He is a wonderful baby. He is so loving and the only one out of three who loves to cuddle. I just love it when he sucks his thumb and lays his little head on my shoulder. He loves to be loved on. I will just sit and rock him and whisper in his ear how much I love him. He takes it all in and enjoys it as much as I do. It is sad now just thinking about it because I know these days will not last forever as I wish they would. He is growing so much everyday and so that is why I cherish every moment that I have with him. I don't ever want to forget that big, huge smile he has when I get him out of bed in the morning, or how those beautiful blue eyes light up when I smother him with kisses.
This past year has been rough on all of us with Ayla's diagnosis of JRA. She has needed my full attention most of the time, and Brennan has been my little angel letting me take care of her even though it has taken me away from him at times. He has been very patient and is such a sweet, calm, loving baby. I don't know how many times (when I am taking care of Ala) I have said I am so thankful that he is such a good baby. God definitely sent me an angel when he gave me Brennan one year ago.


Oct 16, 2008

Cars and Skating....

Well first of all I just have to tell you about Brennan and his new found love for cars. Hmmm.. I wonder where he gets that!! For those of you who do not know, John, my hubby loves cars. He has owned A LOT, restored a couple and can tell you just about anything you want to know about one. His passion or should I say illness is for FAST ones though I must say... And for those of you who do know John and his love for cars, you will find this very funny. Today John and I decided to go grab a bite to eat with Brennan because Ayla was taking a nap. When I got into the car I looked back and saw that Brennan had a little hot wheels car in his hand. He has been playing with them recently, rolling them on the floor and making the vrrrmmm car sound. Which brings up a question. How in the world does a child not yet a year old know what kind of sound a car makes? It amazes me, he is just so darn smart..heheh... Anyway, I asked John where he got the car and he said that he had it in his hand when he picked him up . Well, I will have to post pictures later because they are on my phone, but Brennan held on to that car throughout THE WHOLE ENTIRE dinner. He had the car in one hand while he was stuffing his face with the other hand. It was so funny. I am not kidding you, he did not put that car down one time. I must say that his dad was extremely happy. It is safe to say that he will probably be walking in his fathers foot steps when it comes to cars. Oh boy I guess I am in trouble!!!

Okay so you are probably wondering what the skating is about in the post title. Well this evening we took the kids to a Halloween party at the ice skating rink. I wasn't sure how Ayla would like it, if at all, but it was for the employees children at the hospital where my husband works and it was free, so I thought I would give it a try. Well I have to say that I may have a future Olympic figure skater on my hands. Ayla absolutely loved it! I love it when she actually enjoys herself and has a good time. There are so many times that she does not feel well, and It makes me so happy to see her so happy . Of course she did not put skates on, they had a little section of ice for the little kids and they could go out on the ice and wear their shoes. John held her under her arms and scooted her around on the ice(like she was skating) the entire time. Well until his back could not take it anymore. It was so cute, and she was so cute. She was dressed like a little bunny, in honor of her bunny that is never far from her sight. Of course she cried when we left but we had a great time and I am glad that we went.
I took Ayla to get her blood work drawn a couple of days ago. I was not looking forward to it, but I knew that we needed to get a baseline before we started her new medicine. She was fine until we actually stepped through the doors of the lab. She instantly started crying, I guess she remembers what happens when she goes there. This was not good considering we have to have her blood drawn every month now to monitor her liver. Even though I use a topical numbing cream, it is still traumatic for her at this point. She cried the whole time and then when it was "all done" as she says, with huge tears streaming down her face she said "thank you Ita"(Rita) to the lady who drew her blood. She is so sweet. Of course this scored her big points with the employees in the lab and she got apple juice, Gram crackers, stickers and two stuffed animals. She tells everyone thank you, even when we are checking out at the grocery store or at target she says thank you to the people at the cash register. It is so funny. She says thank you when you change her diaper or when you put a bow in her her. What a sweet spirit she is. I just wish that she felt better. She has been holding her right arm/wrist for the past few days and has told us that it hurts so I am not sure if this is the arthritis or not. I do not see any swelling, so I guess we will just have to watch it for now. I have already got the results of her blood work, everything is about the same. Sed rate is still high, hemoglobin still low.
While I was writing this, her Doctor from Cincinnati called to tell me that she had just got her lab results. She of course told me everything that I had already knew. She said she wanted to reduce Ayla's Naproxen dose from 1 tsp 2x a day to 3/4 tsp 2 x a day. She said Ayla is on the max dosage and has been for a long time and she is worried about GI problems. She also wants us to start her on a multi-vitamin with iron for her low hemoglobin. She said in the future we may have to do some iron studies, but for right now, we will try the vitamins. So for now all we have to do is get x-rays done and that will be all for a few weeks. Please continue to keep her in your prayers. Here are Ayla's most recent lab work results.
hemoglobin 10.6 normal (11.2-16.0)
platelet count 624 normal is (120-450)
sed rate is 61 normal is (0-20) this is used as inflammation marker

Oct 11, 2008

Brennan, Caught in the act!

This morning as I was attempting to get ready, I gave Ayla a banana to eat. Usually I just give her half and she eats it. Well today she wanted to eat it with a fork for some reason so I cut it up and put it in a bowl for her. I sat her on the floor with her banana as she watched Sesame Street. Brennan was in his bed playing after taking his morning nap. I was still running around getting sippy cups and the diaper bag ready to go . We were going to go to the farmers market, they were having a Halloween day for the kids. Well, Brennan started crying so I got him out of bed and let him run around while I was finishing up. I forgot about the banana in the floor but it took Brennan no time to find it. When I realized that it was too quiet and I hadn't heard Brennan in a while, I knew something was wrong. I walked into the room and there was my sweet, precious Brennan squeezing the banana all in his fingers. It was all over him. His face and legs were covered with bananas. Oh yeah, and he decided to smear it all over the couch as well. Trust me he was having a GREAT time. I guess it is safe to assume that he likes bananas. This was his first REAL banana. So again, I grabbed my camera and took his picture. Make sure you click on the picture so you can see his face up close. TOO CUTE! The other pictures of Brennan was taken later in the day. His favorite thing to do is throw Ayla's plastic dishes on the floor. He does this over and over. It is so funny. I guess he likes the sound it makes on the floor. Who knew dishes would be his favorite toy?

Oct 10, 2008

Ayla's encounter with " ipstick"

This evening I had the brilliant idea that I wanted to go to Toys R Us and get Ayla some new crayons and markers, washable of course. I can't remember what I did with her old ones so I had a revelation that she needed to get in touch with her artistic side and she had to do it tonight. My friend had told me about some new markers that have just a little tip on the end, which wouldn't be as messy. So off to Toys R Us we went to get the markers. Just imagine a two year old and an almost one year old running around in Toys R Us . Yeah, not a pretty picture. Ayla had to pick up every toy and Brennan was running everywhere. Eventually Ayla found a huge battery operated car and she had to get in it. After that, we were done. John had to pry her out and of course she threw a fit. Brennan in the mean time leaked out of his diaper (putting it nicely ) all over me. So our trip to Toys R Us was unfortunately cut short. When we got home and after I put Brennan to bed, I got Ayla's new markers out. We sat in the floor and she attempted to color with her markers. I looked away only for a few seconds and when I looked back, she was pretending to be putting on lipstick. Of course I freaked out because it was all over her mouth but a little water took it right off. I knew I was getting the washable ones for some reason!! Ayla just looked at me like what is the big deal and said "ipstick". After I realized that she was not going to die, I grabbed my camera and took a picture. It looks like we will be playing with the markers another time!

Oct 9, 2008

Pediatrician Visit

Today was Ayla's appointment to get all of her vaccines up to date. Thankfully she only needed her hepatitis A shot and the flu shot. We normally do not give our kids the flu shot, but because Ayla will be on Methotrexate which will lower her immune system the doctor said that is was very important for her and for Brennan to get the flu shot. She said if Ayla were to get the flu, it could easily turn into pneumonia and she would probably end up in the hospital. Again, I feel that I have no other choice, I want to keep my children healthy and limit the possibility of them getting sick so what are you going to do? I hate feeling like I have no other choices than giving my children medicine and vaccines all of the time. Since I am on the topic of vaccines, I have been doing some research on them lately and I am just not sure I agree with all of them. Some mothers have swore that vaccines have caused their children with JRA to have flare -ups AFTER they were in remission. It just makes you think, if they ALL are necessary. I don't know, it is something that I am definitely going to think about more and research more. I think more and more parents are choosing to NOT to have their children vaccinated. At least not all of them anyway. Of course the doctors make you feel really dumb when you ask questions about this and whether it is TOTALLY necessary. Okay, well after I do more research, I will keep everyone posted. Brennan's 1 year old appointment is coming up in November so I am sure he will be due some of the vaccines.

Ayla's appointment went okay. She cried of course, sometimes I wonder if this will ever change. The nurse however gave her some smarties (the candy) because she was crying and that helped tremendously. This was the first time she has ever had candy besides a sucker, and she LOVED them. It was so funny, after she ate the first roll, she kept doing the sign language sign for more and kept saying "more candy" the whole entire time the Dr. was in the room. Anyway, I let her have more candy because she did get two shots and I felt bad. Oh, well, it was for a good reason!!! Now that this is out of the way, we will get lab work and x-rays next week. Ayla will start on her medicine two weeks from today.

Oct 6, 2008

Our first trip to the Pumpkin Patch

Today we took the kids to the pumpkin patch. I thought it would be nice for the kids to pick out a couple of pumpkins and to get into the fall spirit. I love fall and the beautiful colors that come along with it, especially here in West Virginia. The trees are so beautiful this time of the year and the weather is perfect. Maybe this will be our new family fall tradition. I thought it would be cool in the evening when we went, so I had long sleeve shirts on the kids, it turned out being extremely hot and they both I think were pretty miserable. Ayla was happy at first but that was short lived. The pumpkins were in a field that was very uneven and bumpy not to mention dusty, and she could not get around to well without falling. She is still somewhat unstable when it comes to uneven surfaces. She decided very quickly that she did not like it and trust me she let us know about it. Brennan on the other hand had a great time, he was sitting in the dirt playing with the pumpkins, having a good time. There is not a lot that bothers him or gets him upset. He is so laid back and happy all of the time, a total opposite of his sister. Our friends, Adam, Kristi and their son Ben went with us as well. Adam took some great pictures of the kids , in which I am very grateful for. Thank you Adam! On the way home we stopped at a park and let the kids play. Well Ayla play. Brennan just walked around in circles like most 11 month old babies do!! Ayla loved the swings and slide. She kept her daddy busy. She kept saying "watch mommy", she was so proud of swinging by herself! I love seeing her so happy. We knew when we left that she was going to throw a fit because she was having such a good time and she did exactly that. We are really going to have to invest in a swing set for next summer. Anyway, here are the pictures from our first annual pumpkin patch visit!

Oct 3, 2008

Rheumatology visit update

Sorry it has taken me so long to update everyone on Ayla's last Dr. appointment. Im sure most of you know by now that we decided to change doctors, so we are now taking Ayla to Cincinnati Ohio instead of Columbus. John and I were not happy with her last doctor, we thought he was not thorough and there were other problems that made us feel uneasy as well. I knew about the hospital in Cincinnati and I did some research on line about it, and we decided to take her there. Today was a VERY long day. We were told that the drive was only about 2 1/2 hours, so we thought if we left around 9am, we would have plenty of time to spare. Her appointment was at 12:30. We had to wake up Ayla to get her ready and fed before we left. Not a good thing, she was not in a good mood and was crying around all morning. I knew then, that it was going to be a LONG day. I was right Ayla cried most of the way there, the drive ended up taking almost 3 1/2 hours and we really didn't know where we were going so we ended up being 30 minutes late. When we got there, Ayla would not let them weigh her , I couldn't even put her down without her screaming so they could get her height. I kept apologizing to the nurse, I felt so bad. We eventually got her weight by giving her stickers. She loves stickers. She was 26 pounds, same as her last visit. We went back to the examine room and one of the fellows (a fellow is a pediatrician specializing in rheumatology) came in to get all of Ayla's past history and information. We will be seeing this fellow(Dr. Das as well the actual Rheumatologist Dr. Huggens) every time we have an appointment. After explaining everything to Dr. Das, which took forever, she proceeded to do a head to toe physical exam of Ayla, something her other doctor NEVER did. Of course Ayla did not like this and she screamed and cried the whole entire time. John had to leave the room at one point because he was so upset. I have to mention too, that this was all done during her nap time, so that definitely did not help. I held her on my lap while she did the exam, but she still was not happy. I was very appreciative of the very thorough exam but I must say that it did take FOREVER. Anyway, Ayla ended up crying for at least 45 minutes to an hour. She wanted to see Ayla walk, so we went to get her some toys out of the today closet they have, but she would still not let me put her down. I must say it was quite miserable. After Dr. Das, heard Ayla's history, did the exam, looked at her most recent lab work which was in July, she said she was going to relay all of the information to Dr. Huggins. Dr. Huggins came in shortly after that and she wanted to do an exam as well. Not a head to toe exam like the other Dr. did, she just wanted to look at her joints and take a good look at the ones that are affected. For some reason, Ayla liked Dr. Huggins and she actually let her touch her and exam her without crying. I was so relieved! After her exam, she went on to tell us that since Ayla has been on Naproxen for 7 months and her joints are still swollen, that we probably did need to move on to another medicine and the next in line is Methotrexate. She did a wonderful job explaining Ayla's condition to us. Ayla was initially diagnosed with pauciarticular JRA (type 1) back in march. "Pauci" means few. By definition, this form of JRA has 4 or less joints involved during the first 6 months of disease. Approximately 40% of patients with pauciarticular JRA will go on to develop arthritis in more than 4 joints over the course of the next few months to years. This is sometimes called extended pauciarticular JRA. This is because the arthritis went on to involve more than the original few joints or joint to involve many joints. If you remember, Ayla only had the knee involved and now her ankle, elbow and neck are involved. So that is where we are now, extended pauciarticular JRA. I thought this was interesting and she explained it very well. She suggested the methotrexate mostly because of Ayla's neck. She said the neck is bothersome to her because you can not inject the neck(if needed) like you can the knee or ankle. Ayla can turn her head to the left without trouble, but she can only turn it a little to the right. There are times too, that she can look up, now I know why she will not bend it back when I wash her hair. Some days are better than others, but I can definitely tell when her neck is bothering her.
We told the doctor's about our concerns regarding the medicine and she talked it over with us until we felt comfortable. Well as comfortable as we can be I guess. We don't want to put her on the medicine but we feel that we do not have a choice at this point. I do not want her to get worse and I do not want her joints damaged later in life because we did not treat it now. The longer you leave a joint inflamed, the more damage you will eventually have. With her sed rate so high, there is definitely some inflammation going on. She said the most common side effects are nausea (for about one day) mouth sores, mild hair loss, headaches and rash. If a rash would occur, then she would probably not be able to take it. The Dr. wants new lab work done, x-rays of all of her affected joints, an appointment with her pediatrician so she can get the flu shot (because mtx lowers your immune system) and all of her immunizations up to date and finally an eye appointment to make sure her eyes are still clear. Wow, it is going to be a busy couple of weeks. Ayla will definitely not be happy about all of these appointments. We have to wait two weeks after her immunizations to start the medicine.
While we were there, a Physical therapist came in and explained to me different exercises that I can do with her at home. She also made a piece of foam to put in Ayla's left shoe called a shoe lift (the unaffected side) because they discovered that her right leg is 1cm longer than the left. This is not unusual because the leg with the increased blood flow from inflammation will sometimes grow longer. This increased blood flow brings more nutrients to the bones around the knee and they will grow more rapidly, causing the leg to be longer on that side. Once the inflammation resolves, the legs will eventually even out again. So with that, we got all of our prescriptions and orders and left. Our appointment ended up being THREE hours long. I repeat THREE HOURS. Ayla eventually fell asleep for a little bit while we were talking to the DR. By this time we were starving and we headed to a restaurant for a bite to eat. One of John's friends had told him about a place that was on the river so we decided to eat there. Ayla did great at the restaurant, we just have to eat real fast so we can leave before she gets bored and wants down. We sat inside next to the window so you could see the river from where we sat. There was a little family of ducks that held Ayla's attention while we were eating. Eventually they left and she kept asking "where the ducks are" I told her that they went home. After that she kept saying "ducks go home" for the rest of the dinner. It was so cute!!
We arrived home almost 12 hours from when we left. We have another appointment in one month. Hopefully it will not be as long as this one!!

Oct 2, 2008

A Day Of Fun

Today my sister and I took the kids to the Clay Center. I wasn't sure what to expect because I had not taken them before, but they had a wonderful time. They played in a ball pit (so much fun) , with musical instruments, went down slides, colored pictures and did lots of other neat things. They were both screaming with excitement they had so much fun. We will definitely have to go back. They are having a Halloween day in a couple of weeks that I want to take them to. Thank you Aunt Amy for going with us and for all of your help!