Vacation Recap In Longboat Key

We recently visited Longboat Key for a few days. We have been wanting to get away for a long time, but with everything happening lately, it's been hard. Dannie and I last went to Longboat Key for our two year anniversary. We used to go to Siesta Key for our getaways, but all of the hotels were booked so we thought we would venture to LBK. The place we stay at is very quiet and there really isn't a lot of people on the beach. Which we LOVE! It's like paradise for us! This is where we stay when we go.

This was Olivia's first time going to the beach. We were hesitant about taking her at first with her medication and sun exposure, but her doctor okayed it. We purchased a sunshelter from Amazon so that we could keep her under the tent when we weren't in the water. It was super easy to set-up and put away. However, we only used it once. Olivia filled it with sand and it was much easier to use the beach chairs and umbrella.

Olivia had such a good time in the water and playing in the sand. We were really surprised she liked the water so much. The pool float we brought for her she ended up lounging in the whole time in the water. There aren't a lot of waves there, so it made it easy.

We always visit St. Armand's Circle when we go to the Sarasota area. This time it was for The Columbia Restaurant and the second time we went to The Daiquiri Deck. There are LOTS of shops and other restaurants to choose from as well. The night we went to The Columbia we got caught in a storm on the way back to the truck. I tried to keep Livi as dry as possible under the umbrella, but that didn't happen. She kept saying "Uh oh" the whole time.

On Sunday Marcella + Will joined us for the day. We spent the whole day at the beach, minus Olivia's nap time. She actually did pretty well with getting a morning nap in everyday. She missed her afternoon nap a few times. I was worried about her not napping at all there and being grumpy all the time. Any nap actually helped out with that. We are currently weaning her steroids and she has about 4 teeth coming in right now. She hasn't been in the best of moods lately, but she did good!

Sunday evening after dinner I didn't want to go back to the room yet so we ventured over to Anna Maria Island. We haven't ever gone there so I wasn't sure what to expect. It was a good 30 minute from our Hotel. The plan was to look for the City Pier. Well, we didn't know that it wasn't off the beach. So, by the time we found it the sun was setting and it had started to rain a little. We were able to get some good pictures on the pier. It was actually really pretty out there. Olivia had a full diaper and ended up peeing through it onto my shirt so that cut our trip short. We really enjoyed our time away and are missing it already! Until next time...

Beach day #1.

Big smiles!

On our way to dinner at The Columbia.

Olivia's 15 Month Update

It's been so long since I have given an update on Miss Olivia regarding her current stats. We recently went to the pediatrician for her 15 month check-up. She was 23.13 lbs and 29 inches long. She has lost quite a bit of weight since being weaned off her steroids. She looks so tiny to us!

Our visit to the dog park.

She is doing new stuff each day! I keep telling people all of her new words, but when I try to get her to say them she gets shy. She's a dancer. She loves all kinds of music and is even humming songs when they aren't playing. She is walking every where! She's even tried running, but she gets clumsy and falls. She still LOVES dogs. We took her to the dog park and she didn't want to leave. If only it was closer we would be there all the time.

Pool fun!

We are still teaching her sign language. It's helped so much since she's been about 9 months old. She started out only signing milk, but now signs "Outside", "More", "Food", "Bath", "Shoes", "Please", and "Thank you" It's crazy how quick she catches on to. I will work with her while she's in the bath and by the next day she will sign what we worked on. She can say "Dog dog", " Dada", "Turtle", "Doctor", "Diaper", "Boomer", and "Yeah, yeah". We still can't get her to say mom. I'll keep working on that one.

She is a fan of her kiddie pool and doesn't ever want to go inside. She could stay outside all day and would come in covered in dirt if we let her. We recently took a trip to the park and she enjoyed it. She was able to walk around and play in some of the flowers.

Feeding her recently is hit or miss. She will always eat watermelon or blueberries. But, everything else we question when we give it to her. She will either eat it all or it'll end up on the floor for Boomer to eat. Boomer loves when that happens.

This coming weekend we are taking her to the beach for the first time. Can't wait to post those pictures and see how she likes the water.

Life On Actemra

This post has been one of the hardest to type because of everything that happened in a two day time period.

Olivia's nurse had spoke to us regarding a chest port for her a few times. Olivia's blood draws were getting really hard back in January. She was the puffiest during this time due to the high dosages of steroids and immune suppressants. Not only was it hard for them to find a good vein, but it's hard holding her down while they are looking.  I was really hoping she wouldn't need one and that it would get easier because I didn't want Olivia to be put through another procedure. Dannie and I went home and discussed it and also researched the different ports. We knew that it would make her clinic days run a lot smoother if they weren't having to poke her multiple times. 

We met with the surgeon that would be performing the procedure on February 12th. We went over the side effects and risks. We also stated that we would rather get an InfusaPort. The other option was a Port-A-Cath. The difference between the two is that the Port-A-Cath has a catheter that is exposed which could get infected. The InfusaPort is under the skin and is only accessed during lab draws or for infusions.  Olivia's surgery was scheduled for February 18th. 

Prior to her surgery she couldn't have any solids after midnight and she couldn't have any milk four hours prior to surgery. We knew this was going to be difficult because she was used to having breakfast every morning. Luckily, since the steroids had affected her appetite she wasn't eating as much. We had to be there bright and early at 7 am. Since the hospital is an hour away, that meant leaving the house by 6 am and waking up around 4:30 am.

Waiting in Pre-op.

Once we arrived at the hospital we went to outpatient check-in. I think we waited there for close to an hour before we were called. I was tired by this point from only getting about three hours of sleep and worrying. When we got called they took us to the pre-op area. We had been there twice before for Olivia's Bone Marrow Aspiration and Lumbar Puncture so we knew what to expect. However, we waited MUCH longer this time. We were in pre-op for about three hours. I was getting a little antsy and not so happy because I knew Olivia needed food and they were taking forever. We passed the time by listening to music, playing with Olivia's Curious George stuffed animal, and just trying to make her laugh. The two previous procedures she had done she already had an IV so the anesthesiologist gave her something to calm her before they took her away. We had discussed this with them because she wouldn't have an IV yet. They said they could give her something orally, but we knew this wouldn't work because she does not take medication well, especially not flavored. Luckily, she had fallen asleep so when they finally came we just passed her off to them. It's the toughest thing when you have to pass your child off to someone you don't know and your not there to comfort them when they need you the most.

Sweet Olivia in recovery.

Dannie and I had already talked about what we would do during the procedure. They said it would take about 90 minutes for the procedure, but that didn't count prep time. We went and grabbed lunch and then went back to the waiting room. It was about two hours before they called us to go to the recovery area so we could be there when she woke up.

The loop in the catheter.

Well, when we got to recovery she was screaming. Apparently, she had been awake for awhile and they were debating on what to give her to drink. Im glad we showed up when we did because she just wanted us and was so thirsty. She drank a whole bottle of water and some yucky Pedialyte. Her vitals were good and they had said they had given her tylenol during surgery which should help with any pain after the procedure. We sat with her for about thirty minutes before the surgeon came to talk to us. He gave us some very disappointing news. After the procedure they did an X-ray to make sure everything was where it needed to be. Well, there was a loop in the catheter. The surgeon didn't like this because it can restrict the flow of intake or out-take. So, he discussed with us that the whole procedure would have to be done again in a few weeks. At this point we were very discouraged because we knew Olivia was going to have to go through this all over again. Not only that, but she was due to have in infusion following all of this. We were unsure if she would be able to still have it.

We went up to the infusion room afterwards which is on the pediatric floor. Once we got up there and told them what happened they said they needed clearance to access the port.  Waiting on clearance took about thirty minutes. It was about 4:30 when this all happened and the infusion room closes at 5. So, we knew that if they got the okay some of the nurses would have to stay after to administer her infusion. They gave clearance and the nurses made sure they were able to pull blood from her port. Since they were able to they knew that it would work.

Olivia's infusion isn't just something as easy as giving her medication through an IV, she first gets Benadryl and then a steroid. We had to sit through both of those and that takes about an hour. Around 5:30 they finally started her infusion of Actemra. This part is really hard to talk about because it all happened so quick and is almost a blur now. Four minutes into the infusion her face started turning red and she acted like she was choking. We thought she had choked on her saliva maybe. But, all of the sudden her body got stiff and she stopped breathing. Her heart rate went up around 200 and her oxygen was about 86 when this all happened. It was crazy! I wasn't sure what to even do! You don't ever expect that to happen. I told the nurse she's not breathing and they yelled for the doctor's. Before the doctors came in the room we noticed she was foaming at the mouth a little and then woke up slowly. The nurses started giving her Benadryl again in her IV to help with the reaction. By this time all of my emotions had overcome me and I was very upset with everything that had just happened. The doctors were checking her out and trying to make sense of what happened. The nurses had said that they didn't think she got enough of Actemra to even have a reaction to it. So, at the time they didn't believe it was from the infusion. We probably stayed there for an additional hour before the doctor said we should probably go to the Emergency Room for her to be checked out. They thought maybe she was having a reaction to the anesthesia she had earlier in the day. There was just a lot to take into consideration since she had so much done in one day.

Waiting to be admitted to the hospital.

At this point we were very upset. We were still upset that she stopped breathing and that we were going to the ER to wait forever. They were expecting us when we got there so we didn't have to wait at all. We had to tell them what happened again and answer other questions. We were put in a room and had multiple doctors and nurses come in and ask questions. We stayed in there for about seven hours. We were very grumpy, hungry, and annoyed that they weren't communicating with us. They finally came in and told us around 12:30 am that she was being admitted. We just had to wait for a room. Another annoyance we found out Olivia was going to have to share a room with another child. This worried us because she has a suppressed immune system. Thankfully, he was just a post-op patient and wasn't sick. So, we got into a room around 2:30 am. We were ready to sleep!! Olivia was tired and didn't really fight sleeping in the crib. She did toss and turn all night which didn't help us sleep at all. Dannie and I pulled out the chair and slept in it. It was comforting actually being able to be so close to him after all we had gone through. I kind of just melted at that point.

She was finally eating! Cheerios! 

You can always expect to wake up early when staying in the hospital. She had labs bright and early. They were able to draw from her port though which was good. Her doctor came in and spoke to us regarding what our next step would be. We discussed other medications and the possibility that Olivia's reaction was actually to the Actemra. But, the only way we would 100% know was to try again. This scared us tremendously because we would be putting Olivia through it again and what if she had the same reaction?! What if she stopped breathing and didn't start breathing again?! These are all things I couldn't stop thinking about! We talked about it and decided to try again. Once the decision was made it didn't take long for them to discharge us and send us back over to the infusion room.

I think it was around noon when we got over there. They set us in the first seat next to the crash cart and made sure they had everything prepped in case of an emergency. All of the nurses were assisting setting everything up and the doctors were in and out checking-in. Again, they gave her Benadryl and Solumedrol. They gave her a higher dose of Solumedrol (steroid) hoping that would increase the effectiveness of pre-meds and side-effects.  She completed the pre-meds with no problem. Around the time they were going to start the Actemra we started playing with some bubbles. We thought that would keep her busy and help keep her happy. About a minute in I noticed her face turning really red. I quickly said "Her face is turning red" and the nurse saw it. She said stop the drip! At this time Olivia was having problems breathing and was very upset. They started Benadryl again and were trying to give her some Oxygen. She was so upset though that she wasn't allowing them to put the mask on her face. They were able to hold it under her nose. We finally got her vitals where they needed to be after about twenty minutes. The whole time was so emotional. The doctors and nurses helped so much!! I was shaking so bad by this time and still holding Olivia. I felt so bad for putting her through it all again, but without doing it we wouldn't have known. Not too long after they got her vitals steady she fell asleep from all of the Benadryl.

Playing with sunglasses in infusion room.

We spoke with her doctor about what we were going to do next because she was due for her infusion, but couldn't get it. She would get infusions every two weeks. The next medication choice was Kineret (Anakinra). She was on this in the hospital when she was first diagnosed. It's a daily injection she would get. I was unsure about this at first because I felt bad having to poke her everyday. She is still too young for Ilaris (another injection, but done once a month) Once we decided on the medication they put in an order for it because it was going to take awhile to get approved by our insurance and to be mailed out. Olivia was still sleeping at this point. I think we stayed there for another two hours before they we could leave. At this point we had been in the hospital for about 38 hours. We were ready to take Olivia home so she was comfortable and we could all get some rest.

Since Olivia was allergic to Actemra and wasn't going to be getting an infusion anymore, we decided to just take out the port and not have another put in. No sense putting her at risk for an infection if it wasn't going to be used. 

Olivia's SJIA Diagnosis (Part 2)

Well if we thought the first week was hard, the second week was even harder.

On Sunday we got a visit from some of her doctors. They informed us that in order to check for some viruses they were concerned about and also some cancers, she would need a bone marrow aspiration. Just hearing those words, especially cancer was the hardest thing for us. Not only that, but Olivia was going to have to be put under. The first thing that went through my mind was her being in pain afterwards. We went over all of the risks and decided it was the best option at that point. We knew that it would help the doctors find a diagnosis and also help them eliminate what they were unsure of. Since they were getting daily labs from her, they had said they would get all the labs they needed for the last of the infectious disease panels as well as any routine daily CBC tests.

(Not related to the paragraph above) We started taking daily pictures of her progress board. Mainly so we could see it once she was discharged. The nurses didn't really bother with filling it out much, but we enjoyed writing in who her visitors were.

They told us they would take her down to pre-op around 7 am. That turned into about 7:30. We were escorted down to the 2nd floor which was pre-op and the OR. She had the sweetest anesthesiologist for that procedure. We really liked him a lot and he he helped calm our nerves by ensuring us she was in good hands. The procedure lasted maybe two hours, I can't remember exactly. During our wait time we went back up to her room and showered and Dannie went and got us breakfast. Once they called us to go meet with her she was awake and fussy. They said they usually aren't in any kind of pain, that she would just be groggy.

They were tracking her daily labs to see if they were trending up or down. From what I can remember at that time, the main concern was her WBC, Ferritin, CRP, and Sed Rate. I'm sure there were others since they were checking to make sure her spleen and other organs were not enlarged.

This was such a rough day for us because the doctor came around in the evening to speak to us about a PICC line for her. Not only that, but her hemoglobin was below a 9 so they recommended a blood transfusion for her. I'm glad my parents were still there for us. Dannie and I had someone to discuss it all with. Not to mention all of the emotions we all had. Olivia had already gone through so much that day, so I felt bad putting her through more, but I knew it would help with blood draws and medications. By the time they came in to take Livi and gave her meds to calm her it was close to 8 PM. It was a LONG night, once that was all done, they had to do an x-ray after to make sure PICC is positioned properly. I think they started the transfusion around midnight and ended around 4 AM. Between the nurse staying in there and Livi waking up every once in awhile, I think I got about two hours of sleep.

Her rash on 11/8/14- Day of Bone Marrow Aspiration

By Wednesday, November 10th they had got some of her labs back as well as the blood smear they needed to look at for any cancer. This is when it gets a little confusing because at some time they spoke to us about Systemic Juvenile Idiopathic Arthritis. They looked over her joints and compared her rash daily. These were all symptoms of SJIA. However, they were also looking at HLH as well. In order for her to be diagnosed with HLH, she would need to meet five of the eight criteria's. Those criteria's are rash, fever, high ferritin, iL2 receptors over 2,400, abnormal nk cell activity, cytopenias,  hemophagocytosis in her bone marrow, and an enlarged spleen. She did not meet the criteria's of what is not in bold. Some of the testing they did during her Bone Marrow Aspiration had to be sent off to the Cincinnati Children's Hospital because they are the leading HLH Hospital in the US and they handle the genetic testing for HLH.

They began treating her Wednesday night with Kineret (an injection), Cyclosporin, and Dexamethasone. Her fever actually broke that night and by morning, her rash had started disappearing. Since the rash and fever were more of SJIA symptoms than HLH, they diagnosed her having MAS, a complication of SJIA. If it was full blown-HLH her rash and fever wouldn't have reacted so fast to the medications. The only cure for HLH is a Bone Marrow Transplant. The medications they started her on were the same meds they would have started, with the addition of Chemo, if it was HLH anyway, so they were still going the same route and still waiting for more results.

We were excited about NO RASH!

Since she was responding to her medications and the rash had disappeared and fever was gone, they decided they should move us to a more isolated section on the Pediatric floor. We were moved to 42 Peds. With that came new nurses and a more isolated room. Unfortunately, a few hours after we got over there the doctors noticed her heart rate was dropping some when she would sleep. They monitored her for an hour and felt better about sending her to PICU to be monitored more closely.

She stayed in PICU for three days. I think we got moved back to 42 on Saturday the 13th. We had really got to know the PICU nurse since she was with her all the time. Dannie and I got to share a chair when sleeping in that room. It wasn't very big, but we made it work.

We received more results back from Cincinnati around the 3rd week she was at Shand's. These confirmed the five criteria's for HLH. They needed to make sure that when she was effected by the SJIA it only effected her joints and not her nervous system. At that point, they recommended her having a Lumbar Puncture to check signs of inflammation. Of course that meant being put under again. Again, we were skeptical, but knew it was important to check. She was scheduled for that bright and early again. The procedure took about an hour. She went to recovery and we were able to see and hold her again while she woke up. Results from that didn't take long and they had said her nervous system was not effected. Woo!

A few more days passed and she started eating more and feeling a bit more playful. We could tell she was finally starting to feel better. They were still doing daily lab draws and her labs were trending in the right direction each day. By this time she was getting two injections of Kineret a day (morning and night), Dexamethasone (steroid), and cyclosporine (Immune suppressant), and protonix (helps with upset stomach) They had mentioned a discharge date, but that was only if she continued on the path she was going. They even started doing labs every other day so they wouldn't be drawing so much blood.

She had visits from her Abuela, aunt Kristin, and Jodi the last week she was in the hospital.

She was discharged on the 21st of November. They had to successfully change her IV meds over to oral before she could be discharged. We also decided to change her daily injections to Actemra, which was a bi-weekly IV infusion. She got an infusion before we left the hospital to make sure she didn't have any reaction before we went home.

Rash at its worst.

Still smiling even though she's covered in rash and has a fever.

Decorating her crib. <3

Walking the halls cause she was tired of the room.

Livi's welcome home from The Ekker's & Burgos' <3

Olivia's SJIA Diagnosis (Part 1)

I have been wanting to type this post for many months, but I've been scared. Olivia's diagnosis is still confusing at times to me. I understand everything, it's just putting it into words for others to read.

It all started around the end of October when she developed a rash. It started on her legs and then on her arms. Unsure of what could have caused it, we started thinking about the food we were consuming. Since she was still getting pumped breast milk, I had to think about what I was eating as well. We couldn't ever think of anything that was out of the ordinary that she hadn't had before. After a few days we noticed the rash would be a little worse in the evenings and at night. Dannie and I never thought it was anything serious because she seemed fine the whole time. After a week of having a rash, she began getting temperatures at night. I took her to the pediatrician on Oct. 31st. The pediatrician thought she had a viral infection. Since she had no other symptoms and her temperature was actually back down that day, he wasn't worried. They did pricked her foot to check her blood work though. Her white blood count was a little elevated, but he still wasn't concerned. He wanted to follow-up if her fevers came back.

We returned home and started watching her rash more closely. It began showing all over her body. Her fevers would come back in the evenings and I think the highest was around 102. She hasn't EVER taken oral meds well. Fighting her for tylenol was not easy. She would gag a lot and puke it all up. She had lots of cool baths that helped lower her temp, sometimes. By Tuesday, November 4th she still had a low grade fever. I decided to call the pediatrician back again and they wanted to see her again. Again, they pricked her foot for labs. Her white blood count was very high at that appointment which concerned him. My mom went with us for extra support. He was unsure what it was and referred us to see an infectious disease doctor in the area. We didn't have much luck getting in contact with one locally and the pediatrician didn't want us to continue waiting. He said the best thing would be to go to Shand's Children's Hospital and see what they recommend at that point. Very worried at this point what it was, we headed to Gainesville. I called Dannie at that point to fill him in and sent him home for my breast pump and milk.

We were in the Emergency Room for what seemed like FOREVER. Doctors and nurses would come in every so often and we would have to explain our story every time. They did LOTS of labs and gave Livi oral meds for her fever. (I have pictures of her rash from during this time, but I will have to upload those later) My parents were both there and Dannie as well. They finally decided they were going to admit her to the hospital. At this time, we still had no idea what we were dealing with, all we knew is that her blood levels were very high and that was worrisome.

From what I remember, they poked her a few more times during the night for more labs. Dannie and I were stressed and very on edge at this point because we had no idea what was going on with our baby girl. We didn't sleep well at all. Dannie and I had to get used to nurses coming in every once in awhile to check on her, get vitals, and also give her meds for her fever every 4-6 hours.

The next morning we were up bright and early for more labs. She may have even had an X-Ray and CT Scan. I can't remember when she had all those done because she had so many. Our days usually began around 6:30 AM because the doctors and students made rounds between 7:30-9:00 am. Again, during these times they just asked us lots of questions and we told Livi's story again and again.

 The next couple of days she had lots of tests done. We were still unsure of what was going on which made our situation even more difficult. We were in quarantine, so all medical personal and staff had to wear a mask and gown. This scared Olivia SO much every time someone would enter the room. Poor girl was tired of being touched.

The only thing we could do was try and make her the as comfortable as we could. Without a diagnosis or any end in sight of when we were being discharged, we got daily visitors from friends and family and just tried to enjoy our time with Olivia.

Dannie's work was amazing at letting him be gone during this hard time, can't thank them enough! Livi had daily visits from Granny and G-pa. They were with us every day. The Burgos family came by, the Ekker's, and the Braswell's. Not to mention all the love and support we got through phone calls, texts, and messages from Facebook and Instagram.

The doctors rounded every morning during the week and were still unsure of a diagnosis. They had said she was a mystery for now. That didn't give us much hope that we were getting out of there anytime soon. We still needed a diagnosis and a plan for her care.

Olivia's First Birthday!

Here are some pictures from Olivia's birthday party. We didn't have a lot of people come. We needed to keep it small so we didn't expose Livi to a lot of germs. She had lots of fun and enjoyed seeing everyone, especially her cousins and Malakai. I enjoyed making all her decorations and purchasing the small ones. I wanted to do lots of personal touches like her monthly photos, the canvas with all her current stats, and the jar for "love notes" I can't wait for her to read them some day! Her cake was funfetti, but we colored each layer so it looked ombre. It was cute and I am so happy with how it turned out!

The cookies were delicious! My sister had a homemade sugar cookie recipe and we loved them! Wish there was still some left!

Granny hugs! 

This was from the night before. 

O-L-I-V-I-A! 

Olivia's 11 Month Update

Our beautiful girl is 11 months! I'm so sad its gone by too fast! She is the sweetest thing. If she's not being sweet and blowing kisses then she's being silly and trying to make you laugh somehow. Lately, she's started showing a bit of sass. She hates getting her diaper changed and getting dressed. Also, if your just doing something she doesn't like she's sure to let you know somehow.

At her appointment on the 20th, she weighed 26.7 pounds and was 27 inches long. Yes, she has her daddy's height. She is currently wearing 24 months pants and 24 months-3T shirts. Poor girl's pants are all too long for her, but we are making them work.

She has got pretty picky eating lately. It's hard to say what she will eat when I make her food. For now some of her favorites are scrambled eggs, meat balls, chicken, watermelon, strawberries, and blueberries. She is drinking formula more than breast milk. I have been trying to pump less so I'll stop making milk, but it's been hard. She have tried to mix some whole milk in with both, but she drinks some then loses interest.

She recently started pulling up on furniture again. She LOVES bath time! Especially, when it's a "bubble bath" She is always blowing kisses. She kisses her baby dolls and hugs them when you tell her to give them love. We call her Miss Destructive because she also enjoys pulling all her toys in and out of her toy box and book shelf. She still likes watching Curious George, Daniel Tiger, Olivia the Pig, and Little Pim is her new favorite.

This month we celebrated my birthday. We went to Red Lobster. She is so well behaved and eats amazing when we take her out. We have to be careful where we take her and make sure no one around is coughing or getting in her space. Since she has a suppressed immune system, we have had to miss out on birthday gatherings with friends and family.

We are just soaking up all the time we can with her before she is a one year old. It's creeping up fast on us fast. I am trying to finish all of her birthday decorations and will post pictures from her party.

Always sticking her tongue out. 

Checking on her baby dolls and throwing them out of their doll bed.

Being silly!