Its been a while...

So here we are-Jaiden is now 1 years old and time has not really "flown" by like many people like to express since Jaiden has medical issues that seem like it is slowing down the day to day. This past week and a half has been a struggle-Jaiden was sick (loose stools & vomiting) not wanting to eat and definitely not being herself. Its started off with loose stools (which I thought nothing of) in which her pediatrician said she may just have a stomach virus that has to go away on its own...it wasn't until the next day which she started vomiting anything she would take it when I became concerned. So to the Emergency Room we went (last Sunday-6th). We had to travel from our Army duties from Los Angeles back to home in Victorville to pick up Jaiden and then drive back down to Orange County because we had to take her to Children's Hospital of Orange County (since this is where all her information is).

Long story short-they did blood work and in 6 hours they sent up home with the same information we came in with-she was having loose stools and to keep her hydrated, UGH! I thought duh, I knew that. The next morning Jaiden was still having all her symptoms and I took her again to the pediatrician and was told that she needed to just have rest and to make sure she stayed hydrated-it seemed as if this was not important to anyone, I was getting aggravated by the minute. So back home we go and I was told to come back the next day if it didn't stop....so of course I was back the next morning. Finally, the doctor felt it was necessary to have Jaiden go to our local ER and get her hydrated with IV fluids and her medication (steroids) by IV as well. Then off to the ER and had another stay of about 5 hours with some hope that she would turn around once she was given the fluids-after the fluids we were told to give it another 24 hours. It is now Thursday and Jaiden is worse off then she was before-this time very lethargic...and not wanting anyone to touch her. This time we went back to the pediatrician and brought in a stool sample and told them that they had to test her stool, sure enough there were traces of blood in it...now the pediatrician was finally worried like we were. After the visit we were to go back to the CHOC ER and try and get admitted and my husband had enough of it and told her doctor that she must be a direct admit-we had spent $250 in the past four days on deductibles and this was getting ridiculous.

It is now Thursday and we were admitted to CHOC to figure out what was going on with Jaiden-they ran blood tests, stool tests, urine tests, and an ultrasound-this time they figured what was going on-it was a urinary tract infection and gave her the antibiotics needed. While at our stay she was again poked and prodded and had the IV with fluids and all her medications to include the new antibiotics. The stay was much shorter than we anticipated-we were discharged on Saturday the 12th (so excited for that). Since it was not what we expected we started our stay with the Ronald McDonald House (they remembered us from last time) and had to cancel our baby girls first birthday party. Either way we were SO happy to be home for her true birthday on the 13th! Her celebration is now on March 19th and she will be sharing that day with her cousin Alexa (its her 5th birthday party). Everything seemed to work out and Jaiden is in much better spirits and acting like herself again.

Since Jaiden has an autoimmune disorder (JRA) any type of virus or infection that a normal baby would get will be much more worse for her to get rid of and to deal with. I just wish that Jaiden didn't have to deal with anything like this because going back an fourth to hospitals is something I do not want her childhood to be filled with.

Another Appointment...

Monday was another appointment for Jaiden, but this appointment was just to see how she was reacting to all the medications given and to start getting her off of the predisone (steroid). The doctor acknowledged that she was doing great and happy that the medications were working so quickly. One thing that I was doing wrong-I was not giving Jaiden the full amount of Predisone per day....I thought I was supposed to give her one pill twice a day, but it was two pills twice a day-what an idiot (or so I thought). The doctor was happy that she was having improvement from such a small dosage and somewhat surprised by that :) The only thing that will be an issue is cutting the dosage down from it being so small already, so we were prescribed smaller dosage pills to start giving her.

The only concern I still have at the moment is that Jaiden's rashes are still coming out on her face, arms, and legs. I was told not to worry about it, but I can't help but to think about if this means her fevers are going to start coming back (her rash usually only came from when she had fevers). Again, I was given more paperwork about JRA at the appointment and had the social worker visit me and ask about how I was doing and dealing with everything. I think I am dealing with it has it comes and taking it one day at a time-there's really no other way to go about this disease.

On the 13th is Jaiden's first birthday and I am SO thankful she will be in better health and spirits on her birthday party which is on the 12th. Its going to be a fun-filled day with friends and family sharing that day with her.

changes....OH changes!

Jaiden has been taking her new medications since Tuesday and I thought after her vomiting up them the first time would be the last of anything out of the ordinary, boy was I wrong! Wednesday is the day Braulio gave Jaiden her shot of Mexotrexate and she did fine, a little crying but nothing unexpected. The day seemed to go well and Jaiden was a bit cranky and sleepy from the Predesone.

SO on to Thursday....Jaiden woke up with hives/rash ALL over her face-it looked horrible and she had never had this type of rash located on her face, never! I immediately called her pediatrician and was brought in to see what I was talking about. Both of the doctors in the practice agreed that it had to be a reaction from the shot given the day prior because she didn't have this reaction immediately following the oral medications. Now the doctor had to call her Rheumatologist to talk it over. All day Jaiden was in the worst mood I have ever seen her in. She was not wanting to be held, sat down, laid down-nothing was making her happy, not even her Mum-Mum crisps! I was so frustrated with the day and couldn't believe she had turned into a complete different baby in such a short time. I had to say to myself that she will improve, things will get better. Good thing I waited...ha ha ha-I have no choice but to wait.

Today was an immediate change-I thought I was dreaming. Jaiden didn't have the rash on her face or anywhere else on her body and was so happy. Again, how could she change so quickly? While I was working on my paper in the office she was crawling around finding things she shouldn't...she went straight to her favorite place-the shred pile next to the shredder :) She was babbling like there was no tomorrow. To fill everyone in Jaiden does multiple things that she has learned from her Grandma Maria-

she pants like a dog when you say "where's Roxie? (our Beagle)," waves her hands in each direction when you say bye-bye and when she doesn't want her bottle or food anymore, she points to her palm when you say "palm, palm, palm," she looks all over the place when you say "where's Abuelo?" and blinks her eyes when you say "ojitos." Seriously her Grandma taught her all of this :)

I am hopeful that she will continue this good streak even though she has to get blood drawn (she had to today) two weeks from today and then every six weeks as well as get her medicine shot once a week from Daddy.

Jaiden is such a strong 11 month old baby and all I want is for her to be happy. It's going to take more time to see the progress but so far we have seen a preview.

Appointment Time....again

Today is the day we are supposed to start treatment so as you can expect I was very happy to get to this appointment. Today was going to be Jaiden and I as Braulio had to attend class during the time of the appointment.

As we are driving down Cajon Pass I start to smell a little surprise that Jaiden was working on in her diaper and just didn't want to have to stop, but soon realized that we had to as we got to North Fontana....so got off the freeway and changed a diaper that was all over the place-at least 15 minutes to clean up and we were back on the road and somewhat late since we took an unexpected stop.

We checked in at 9:35am with only 10 minutes to spare (the appointment was at 9:45am) even though we the doctor would not really come to the room we were in until 45 or more minutes later. We were given all the instructions and paper you could think of for her diagnoses and it was a bit overwhelming to say the least. We also had a visit by the JRA social worker to just go over our concerns and disappointments.

After all of the information "overload" the doctor finally came in to tell us that about her bone marrow biopsy results and she was VERY happy with them and so were we......NO leukemia! Yay! I was very excited for the news on the results, but couldn't really show it because I was still trying to remember everything else that was told by the nurse and social worker about JRA. I was given her new prescription information and she will be taking:

Prednisolone (liquid)-2x daily
Leucovorin Calcium (pill form-I have to crush)-once a week
Methotrexate (subcutaneous-injected)-once a week

The Prednisolone is a corticosteroid medication; usually used for inflammation. Leucovrin is used one day after the Prednisolone to help counteract the effects from Prednisolone, and the Methotrexate is an anti-inflammatory agent used to treat rheumatoid arthritis and other inflammatory conditions. It works by suppressing the blood cells that cause inflammation. These 3 new prescriptions will be used with her Naproxen and Zantac that she has already been using. The Naproxen is like Advil in a way and the Zantac is to help her belly with all of the medications that she will be taking.

After the hospital visit we had to head straight to Barstow because I coach and practice starts at 2:30pm and I made it with 13 minutes to spare after I dropped Jaiden off with Grandpa (grandma is in El Paso visiting her new cousin Gabriel). After finished with practice I picked Jaiden up and off we were again to get home finally and it was already a little after 5pm. So with her new medicine in hand I figured as the doctor stated to start it immediately....we long story short, Jaiden didn't do too well with the Prednisolone and vomited all over the kitchen floor and all over me :(   I now have to call the doctor the next morning as it states to do so if she has a number of side effects and vomiting is one of them. I had to give her a bath and clean myself up and being that Jaiden was so exhausted from everything today and then the vomiting my poor baby girl went to sleep for the night at 6pm (the earliest time yet).

All that I can think about right now is that why does there have to be another "blow" to our process...it seems like if its not one thing, its another. I know this is going to be a challenge because it has already been, but I just need some reassurance that this IS going to get better-I guess I'm just too impatient right now.

The 2nd Bone Marrow Biopsy

We left the house today at 7am since we had to be back at the Children's Hospital of Orange County by 9am for her procedure to start at 9:30am. The worst part of this ordeal is that we had to starve the poor baby (no food or drink for 9 hours prior to the procedure) and she WAS NOT happy. We arrive about 45 minutes early since traffic for Friday was not that bad. Jaiden was very fussy by the time we arrived because she was expecting her bottle for the morning, but Grandma Maria was there to keep her pre-occupied in the back seat.

The room was already set up and ready to go as soon as we arrived. I had to call Jaiden's pediatrician to make sure the approval was sent to the infusion center which was cutting it very close, but it was delivered. Having an HMO can be a pain in the rear, but I am very thankful we have insurance-even though we pay like crazy to have it. There were home-made blankets for Jaiden in the room for her to take home, along with a stuffed kitty cat and some toys to keep her occupied....well let's just say that the toys nor the TV with cartoons helped at all. Jaiden knows what going on and is aware of who those people in scrubs and white jackets are and don't like them one bit-she's had enough!

I had to hold her while they sedated her and it doesn't get easier even though this is her second procedure-it hurts me deep down inside to know that she is put to sleep in a manner that children should NEVER have to experience, ever! I don't like the way her body feels and her facial expression-children are always supposed to be full of life and movement and when this procedure is about to start that all stops.

The procedure was about 35 minutes long and we were called back in the room and Jaiden of course looks and acts as if she was drinking a little too much :) She did well and we had to wait about 20 minutes before we could leave and head home. We made sure to feed her the much anticipated bottle she was waiting for and she feel fast asleep as we made our way back home. We are hopeful the bone marrow biopsy will show nothing new as it did last time so the treatment can be started on Tuesday....more to follow next week!

February 9th, 2011

After initial appointments (in January) after the release found nothing, we were back to doing what we normally do at home-keep a journal. It seemed as if January was just staying the same with no major changes good or bad until about the 4th week in January. As I keep the journal and tend to Jaiden (she is completely attached to me and only me) I realize that there are changes in her symptoms and attitude and they are not for the better. She seemed to wake a lot in the night crying out, but falling back to sleep immediately and swelling was now in her knees, hands, fingers, feet, and toes. Initially the swelling was only in her knees and index finger. She also developed a cyst which feels like a hard ball of mass near her thumb on a joint which appeared literally out of no where. Again, we went to her pediatrician to make sure he knows of what is going on and what changes are changing for the worse. After that there were more blood tests to be done and to go to our scheduled appointments which on February 9th.

The first appoint we had was with the Rheumatologist and this time it was much more informative. With all of Jaiden's labs being so fluctuated and the symptoms she showed proved the Kawasaki Disease diagnosis to be incorrect and that Jaiden actually had Systemic Juvenile Rheumatoid Arthritis....again we were like what!?!? How could this be, 3 months later and figuring it was something else all along. We are saddened that something like this could be a part of Jaiden's health and 3 months later there can finally be some closure to what is really going on with her. The Rheumatologist still wanted another bone marrow biopsy to be completed prior to the start of treatment and we were scheduled right then and there for the minor surgery for Friday the 11th. This biopsy was done before when she was admitted to CHOC but no findings came from it. Come to find out that the steroid that were given while in Missouri could mask a cancer (if there is any) in her bone marrow and this second time around will have had enough time for the steroid to have left her body. This second procedure will make sure there is nothing else really going on that would need a different treatment. With the procedure to be completed tomorrow we already have her first treatment and appointment again with the Rheumatologist on Tuesday the 15th to get things started.

The "Holiday" Season 2010

The beginning was not really the beginning at all...it was more of an in between. Our daughter Jaiden was a healthy baby girl up until almost 9 months of age and her health seemed to change in an instant.

Jaiden was an easy going 8 month old until we started noticing little hive like rashes all over her body around the 20th of November. We had planned a Thanksgiving vacation to fly to Missouri to see my parents and figured we should go to our daughters pediatrician first to make sure the hive like rashes were of no concern. It was 2 days prior to leaving and the doctor gave us the OK and stated that it may have just been an allergic reaction and prescribed allergy medication. So with that in mind we left the day prior to Thanksgiving with a great flight of no fussiness. The day we arrived went smooth and Jaiden didn't mind the plane ride or the hour and a half drive to my parents home. Thanksgiving day was not the most easy going day-Jaiden started acting unusually fussy, much more rash appearing and was warm to touch, but just thought she was getting a cold from the possible climate and elevation change.

Friday night/early Saturday morning is when the temperatures started to spike at 104 degrees with major rashes/hives everywhere and I was WORRIED. So off the the tiny little emergency room in Sweet Springs, Missouri. We were the only patients at this hour so the doctor had to be called in. As concerned as we were the doctor believed she may just be having flu like symptoms or allergic reaction...with that in mind he gave Jaiden a steroid shot and sent us on our way and advised us to have her on Tylenol and Ibuprofen, and we did just that. Within the 24 hour period-NOTHING changed and we found ourselves back at that tiny little ER with the same doctor and the concern that it may be an infection that is causing this and we were given an antibiotic for her and was told the same as before, but this time the concern that if this didn't change anything again in 24 hours that we had to go to Children's Mercy Hospital in Kansas City (an hour and a half drive) since he is not a pediatric doctor. We then go home hopeful that there will be change BEFORE we have to fly back home on that Tuesday. Being that this was Sunday we figured Monday Jaiden would change, but we were completely wrong-everything stayed the exact same. Now it is Monday night and we are rushing to get to the children's hospital as we had to pack and get ready to fly the next morning after the ER visit. We were at the ER in Kansas City for four hours and the doctor believed that Jaiden had Kawasaki Disease....WHAT? I have never heard of that disease and was shocked that my little girl could have something so rare. The ER pretty much gave her pain medication to get her to be good while flying back home in just a few hours. Let's just say it was the worst first vacation for my baby girl because the flight home was nothing like the flight to Missouri.

The entire time while in Missouri we are in contact with Jaiden's pediatrician and had to go to the office the next morning. Her doctor confirmed that he too believed that Jaiden had Kawasaki Disease and didn't feel comfortable treating her as he has only seen one case in the 37 years he has been in practice. We were immediately admitted to the local hospital. While there over night the other doctor in the practice wanted to look at Jaiden and he too agreed that she had it and must be admitted to a children's hospital for better care. So that next day we were off to the Children's Hospital of Orange County by ambulance. I just couldn't believe in what was happening and how this could happen to our baby?

As soon as we arrived at CHOC and admitted, Jaiden was poked and prodded for everything...my poor baby was exhausted from the past almost 2 weeks of travel, sickness, hospitals and now we arrived late at night and they wouldn't leave her alone. This would continue for the next 20 days. Jaiden was treated for Kawasaki Disease and taken blood for every possible disease, disorder, cancer, etc that anyone could possibly think of. The treatment was IVIG and it was supposed to turn Jaiden's health around almost immediately-which it didn't. All the specialists involved in her case were awe struck and just didn't have any answers for us because all the tests came back negative...nothing was showing any kind of lead in any way-Jaiden was a mystery infant.

The doctors released us on December 22nd with no definitive answers and to just monitor her with a journal and some medications that would keep her somewhat happy. To say the least we were NOT happy with the answers we were getting. So off to home with a hopeful outlook that being home may help Jaiden get back into her old self again. The holidays (her first Thanksgiving and Christmas) was not the ideal holiday's I wanted or thought she would have...they are holidays that we will never forget even though Jaiden will not remember.

The patience that my husband and I had to develop while going through this initial process was very difficult and stressful because we were both in school (him in pre-med classes, and me with my graduate classes), working, teaching and coaching. Jaiden of course came first and everything else was last, but the stress to perform at a level one is used to can be very trying to the most successful person in this type of situation. We figured this was not over since no answers were given and multiple appointments with the specialists (Oncologist, Cardiologist, Rhumetologist, Hematologist, and Infectious Disease) were given as we left. This was going to continue until someone figured something out!