Brooklynn's Cerebral Ataxia

Now that the cloud of Brooklynn's illness has passed and her recovery is well on its way, I think I can take the time to blog about her experience and the last few weeks in our house...
It all started the week before Valentines Day. Maylee had a little head cold and a few days later, Brooklynn started showing signs that she was next. No big deal I thought- a few days and she'd be better. We took off to Utah for the weekend to be apart of my brother, Skyler's, proposal to his sweetheart, Jasmine (more about that later). And while we were there, Brooklynn ran a high fever off and on. She still was her happy, normal self so I didn't really worry too much. We came back Monday and I was so sad thinking that she would miss her Valentine's Day celebration at school on Tuesday because she was sick. BUT she woke up feeling great- no fever and no running nose. So to school she went and she enjoyed every minute! But the next morning was a little different story. She wasn't feeling good and just wanted to lay in my bed all day and watch movies, so that's pretty much all she did. By that evening though things took a turn for the worse. She was running a fever and complaining and crying about her head hurting. She would just rest her head on my lap and I would rub her forehead til she fell asleep. She had moments of rest, but would wake up crying in pain again. I thought she either had an ear infection or sinus infection. After consulting with my mom, I called Paul at work and told him what was happening and we decided I should take her to urgent care for a 7:00 appointment. I quickly threw some clothes on both Brooklynn and I, as neither of us had made an effort to get ready that day, and off we went (so nice to just have my mom right there to keep Maylee). Brooklynn fell asleep in the car and I carried her into the office. She just wanted to lay on the couch. Then we went back. She weighed in at 31 lbs and 40" tall. The nurse took her temperature and sure enough- 102. The Dr. came in soon after and checked both her ears. Her left ear had too much wax to see anything but her right ear was clearly infected. I asked about a sinus infection because she was complaining about headaches and he said it was possible but there was no way to tell with a child her age. He assured me though that if she did have a sinus infection the antibiotic for the ear infection would also clear a sinus infection. Before he prescribed an antibiotic I informed him of our experiences in the past with Brooklynn on antibiotics for ear infections. She didn't respond to amoxicillin and needed shots in the past, so this time he prescribed azithromycin. As I was finishing up with the front desk to go home, Brooklynn was laying again on the couch in the waiting room and then started crying saying that she needed to throw up. I quickly grabbed her and we made it to the trash can right there in the waiting room. Twice stuff came up before we left. I thought it was odd that she was throwing up because in the past she had never been ill like that with an ear infection, but I just assumed her body was in a lot of pain and that was the way it was responding. On the way home I stopped by the pharmacy to pick up her antibiotic and home we went. She fell asleep before we even made it to the pharmacy so I knew when we got home we would give her a dose of antibiotic and put her straight to bed. As soon as we got home and I carried her in, all she wanted to do was lay down. She kept repeating she was so sick. My mom and I couldn't even get her to sit up to take the antibiotic- I had to force it down while she was laying down. Then I put her in my bed with a bowl on the nightstand just in case.

This is her fast asleep after the Urgent Care visit and ear infection diagnosis.

I quickly got ready for bed and called Paul, who was away for the night on business, to let him know how the urgent care appointment went and how Brooklynn was doing. When I climbed into bed, Brooklynn was fast asleep. That night went alright. She would wake up every few hours and just cry about being sick, I would rub her head and soothe her back to sleep. About 3 am that morning she needed to go to the bathroom and said her legs hurt and I needed to carry her- so I did. Then I sat her on the toilet assuming she would hold herself up as she normally does but couldn't, her arms were shaky and gave way- luckily I was right there to catch her, but of course it scared her and she was crying about everything! Poor thing. We went back to bed fairly easy and I didn't really think much about it except that her poor body was going through the ringer. Thursday morning she woke up feeling sick but not as miserable. I gave her another dose of antibiotics and noticed that she had thrown up in the bowl I had left on the night stand. During the night I never heard her get sick- she would have told me, so I asked when she threw up and she said before she fell asleep the night before. I COULDN"T believe I didn't hear her- she didn't cry out for me and I felt AWFUL that she did it all by herself. She was happy when I brought Maylee into my room to watch a movie with her and I brought her breakfast in bed and fed it to her because she said she couldn't do it (again, I didn't think much about that either because I often feed Brooklynn her meals just to get her to eat). That entire day she complained about her legs and when she would drink from her sippy cup her hands would shake excessively. As the day progressed these symptoms worsened and her headaches seemed to also be getting worse- she would cry if I EVER tried to sit her up even for a minute. Both my mom and Paul had called to check in on her during the day and I told them what was happening and all 3 of us chalked it up to her body being really weak and fighting off her ear infection. It wasn't until later that night that my intuition really started telling me something is seriously wrong. I convinced Brooklynn to take a bath that maybe we could get her fever to come down and she would feel a little better. Just as I was getting her in my mom's big tub, my bff, Stephanie and her mom showed up to come visit us. I yelled out to my mom that I needed help with Brooklynn in the tub and all 3 of them came in. With my big belly, a bath would have been difficult enough but Brooklynn couldn't sit up on her own- she needed me to hold her and she was crying about the pain. So I held her and my mom quickly washed her and her hair and we got her out. I showed my mom, Karrie, and Stephanie what was happening with all of her shakiness and inability to sit, stand, or walk on her own and everyone agreed that something was wrong. We thought it might be a reaction to the antibiotic so we checked the label and sure enough it said muscle loss or weakness was a rare but serious reaction and if that was ocurring to contact the Dr. or pharmacy immediately. It was already after 7 by this point and so we called the pharmacy. They told us to stop using the antibiotic immediately and call the Dr. first thing. Paul returned home shortly after all this and I showed him as well. We started researching the antibiotic and thought for sure her symptoms were a reaction to the medicine. That night my dad and Paul gave her a beautiful blessing and Paul and I often speak about the peace we felt that night that all would be well with our precious Brooklynn. The next morning, Friday, I already had my 2nd 3-hour glucose test scheduled that Paul was accompanying me to in hopes he could help me keep the drink down. While we were there, we called the Dr. and scheduled an appointment for that afternoon to bring Brooklynn back in. The glucose test was a disaster again so after 2 hours, throwing up AGAIN, we headed home to our Brooklynn. Poor thing was running a fever again and exhausted. We had a little lunch and Paul took a nap with her before we headed out to her appointment. All she wanted to do was lay down and sleep.



Taking their nap before returning to Urgent Care

In my opinion the scariest moments of the entire experience happened next. We went in to see the Dr. Brooklynn of course was laying down and sleeping on the patient table the entire time....



We started to explain all the above to the Dr. Of course since we thought it might be a reaction to the antibiotic and she was experiencing "muscle loss or weakness" he tested her strength, having her squeeze his hand, push her foot against his hand, and testing her reflex muscles. All were fine. That was the first hint to me that whatever was happening was not happening with her muscles and then I began thinking it was something with her brain- a scary thought of course. The Dr. just continued to listen and look on his computer and there were moments of silence where he would just stare at Brooklynn. This made me nervous and uncomfortable so I would talk more and explain more of what I had been observing in her behavior, hoping at any moment he would tell us what was wrong and how to fix it. That obviously never happened. Eventually he calmly told us he didn't believe this was a reaction to the antibiotics but he didn't know what it was- he had never seen anything like it! WHAT!?! Of course my brain goes into a little panic mode thinking all the worse things, but I held it all in and held it together. Paul did too. I could tell he was trying not to frighten us or worry us, but by trying not to I was! He said he could switch the antibiotic to be safe but he thought there was something else going on and we should probably take her to a Children's ER. In Paul's calm way he asked, "Okay, should we take her like first thing in the morning or right now?" The Dr. said "Right now". That urgency hit hard. He then said he was going to bring in the pediatrician and get a second opinion before we left. In came the pediatrician and we repeated the entire story again (a story we would obviously be repeating SEVERAL more times). She tested her muscles again- mind you all while B was laying down- and said she would switch the antibiotic, but she should be fine and we could go home. A little puzzled by the complete different opinions, Paul asked her, "Well why does she shake so much when she sits up?" And he grabbed Brooklynn's hands to pull her up to sitting position. Brooklynn instantly began to cry and shake like Michael J. Fox. She reacted with a "Wow! Thanks for showing me that." She then concurred with the previous physician and said we needed to go straight to a Children's ER and left us alone in the room. I headed to use the restroom not only because my bladder was full but I needed a moment to myself and I didn't want Brooklynn to see me upset. I took a few minutes in there to say a little prayer, have a good-quick cry, and gather my composure. When I came back into the room, Paul was already on the phone with my mom to update her with what was happening and ask her to watch Maylee a little longer, because obviously we would not be coming home for who knew how long. Paul was keeping it together until my mom asked him, "How are you and Ashley?" At that moment he handed me the phone and walked into a corner to have his own moment, trying to hide it from Brooklynn. I finished the conversation with my mom- barely. You know in moments like that your mom's voice or face just makes you want to release everything and cry like a baby! The unknown was scary. The lack of answers was scary. The urgency to head to the ER was scary. Brooklynn's obvious pain was scary. And the first time experiencing all this as parents was scary, but we were going to face it, head-on. We had no choice. We had faith. We had support, and we had each other.
We had a choice of Loma Linda or Rady's. Originally I wanted to head to Loma Linda in San Bernardino just because my mom had had great experiences there when my little brother was sick but after she had called my dad (who had left earlier that day to take my Grammy with Alzheimer's up to nor cal to move her into an assisted living place), he thought we should go to San Diego and Paul agreed because he works in San Diego. So San Diego it was and away we went. Of course my mom was worried for all of us and asked if we wanted her to head down there- she had already made other arrangements for Maylee if she needed it and just wanted to come support us. I told her wait until we got to the ER and had some more information (without my knowledge, my dad of course was telling her not to listen to me but get in the car and be with Paul and I- so she made the arrangements for Maylee- I believe my sister-in-law, Brooke, came to watch her and she, Ryan, and Shayna headed down to be with us and made it just as things were calming down a little in the ER. I know my dad was just torn, aching that he was away while this was all happening, but knowing what he was doing was just as important and needed his attention).

During the drive we tried to get our feet back on the ground. We explained to Brooklynn that we needed to take her to the hospital so the Dr.'s could figure out why she was shaky and why her head hurt and help her feel better. She understood. She was hungry so I gave her an apple to eat and then she quickly fell asleep again. Paul took on the positive, optimistic role again- which he does SO well. He encouraged me not to worry until we really had a reason to worry. I told him my instincts were telling me something was seriously wrong with her brain- why else would she randomly be experiencing all of this? He, in true Paul fashion, tried to make a tense, serious situation light by throwing in some humor, he said, "Well, let's just hope those are the same motherly instincts that told you you were having a boy." I actually laughed, and we held hands almost in silence, I'm sure engulfed in our own thoughts, the entire 40 minute drive. I did give Paul a warning that we may be waiting in the ER for sometime and we should prep ourselves for a long night.

When we arrived, there was no nearby parking so we decided that Paul would drop me off at the entrance, I would carry Brooklynn in and he would park the car and meet us inside. I had to- at 32 weeks pregnant- carry my 30 lb 4- year old like a baby in my arms to try to keep her in a comfortable laying down position where her head would not pound with pain. The ER was PACKED and I was about 4th in line to check in. Luckily, Paul quickly made it back and stood in line for me while I found a nearby available couch for me to sit and have Brooklynn lay down, with her head in my lap. When Paul made it to the nurse to check us in, he explained to her that our Dr. in Temecula sent us and gave her a description of her symptoms (head hurting, ear infection, can't sit, stand or walk on her own, vomiting, shakiness). The nurse came around to see Brooklynn and we tried to lift Brooklynn up. She wrapped her arms SO tight around my legs and began screaming, "No, no... I have to lay down!" The tears and screams would break anyone's heart. The nurse quickly gave her a bracelet and took us right back. Things happened quickly from there.

We met with the ER Dr. who initially thought that what she had was Cerebral Ataxia, but of course there were other diagnosis that it could be as well and we needed to run all the tests to rule them out (bleeding on the brain, tumor, bacterial meningitis, etc). For whatever reason from the very get go I believed it was this Ataxia and I really didn't concern myself with the other scary possible results. From that moment on, all I focused on was Brooklynn- being right by her side, trying to keep her as calm, happy and comfortable as possible.

First thing they needed to do was get some blood work and put an IV in her. They also wanted to do a CT scan and a spinal tap but because she ate that apple in the car on the way over we had to wait 3 hours for her stomach to be "empty". At first they had an intern paramedic try to draw blood from B's right arm. Of course she cried and he missed- leaving a HUGE bruise you may see in some of the later pictures. The male nurse then took the blood from a vein in her right hand, but the blood wasn't flowing very well so he had to twist and turn the needle in her hand to get all the blood he needed. My heart was aching for Brooklynn as she just stared at me in such pain and with eyes that said, "Mommy, why are you letting them do this to me?" I had to remind her and myself that this is what they had to do to help her feel better. Paul doesn't do well with blood and needles and on top of hearing/seeing Brooklynn he left the room. Ive never seen such emotions from my Paul. It was heart warming for me to see such a strong man love his little girl, our little girl the way he did. The whole experience he was so tender, calm, and loving with Brooklynn- how could he not- but to actually witness your eternal companion in that light is indescribable! After drawing the blood they had to put the IV in, which was just as traumatic, but they got it in. After that, Brooklynn kept asking to get back in the car. She wanted to go home. And from that moment on, she also became extremely quiet and non-trusting of anyone who came near her in scrubs.

She became so quiet and didn't want anyone coming near her.

A little while later they took us up to do the CT. Paul stayed in with her, because obviously I am pregnant and can't be around x-rays. She did perfect and stayed still the entire time! Then when we got back down to the ER, my mom, Ryan and Shayna had arrived and took turns coming back to see her. Brooklynn was non responsive to anyone. Then it was time for the spinal tap. We didn't realize they had already put a sedative in her IV to prepare her for the spinal tap and Brooklynn began smiling and laughing at Paul and I. It was SO uplifting to see her smile after all that we had just witnessed. We knew it wouldn't last long and so we relished in it. She was laughing and giggling at anything and everything and nothing!

The smile we basked in for the moment

Originally they wanted both Paul and I to leave during it (which Paul would have anyways), but then Brooklynn was responding so well to me that they decided just to raise her bed so I couldn't see what they were doing and I just focused on Brooklynn's face and making her comfortable. She laughed and smiled the entire time! I think she only looked behind her twice to see what they were doing but she never cried- in fact the nurse said he had never had a 4 year old giggle through a spinal tap so he gave her a HUGE dog as a gift for being such an awesome patient.



The fluid came out clear, which was a good sign so we were happy with that. Now it was just a waiting game to get those results and in the mean time they were admitting us. My family headed to in-n-out to get Paul and I some food and of course everyone was shoving water down my throat and telling me to stay hydrated and use the restroom and take care of myself. I thought I did a good job, but it's hard to think of yourself and pregnancy when your child is in such pain.
We headed up to our room to get settled and hopefully get Brooklynn some food because the poor thing had only had an apple since lunch time and it was almost midnight! We barely made it to our room and our favorite Dr, Kate Scott, came in to let us know that the CT came back normal and the spinal tap looked good too, other than her elevated white blood cell count- which tells us that her body is indeed fighting an infection. She answered many of our questions and let us know that they were able to rule out bacterial meningitis which was a great blessing, but they wanted to keep her on antibiotics until after the MRI in the morning, just in case she was still fighting some kind of bacterial infection. We ate, fed Brooklynn and made a plan. I decided to stay with Brooklynn and Paul would go home with my family and come back in the morning.
The night went as you would expect. Hardly any sleep. Back pains. Brooklynn waking up occasionally just grunting in pain. I did as I did at home, rub her forehead and soothe her back to sleep. Nurse came in several times to check her vitals- always normal :)

We were happy when daddy arrived the next morning. Saturday was full of family visitors and waiting. The MRI ended up being pushed back to Sunday so we just hung out all day. The neurologist did come in to visit with us and explain where we were at. He also thought we were dealing with Ataxia but he wanted to have an MRI to get a clearer picture of her head. He explained to us that Ataxia is a random event, happens to less than 5% of children, and it usually occurs after an infection (like her cold or ear infection). For whatever reason this infection decided to settle on her brain, affecting her motor skills and walking and such. There is nothing we could do to prevent it or really treat it because it is most likely viral. It will just take time for her body to fight off the infection and then it will just take time and therapy (which is another story) to regain all those skills back. When we asked how much time, he said it's unknown. Some kids take a few weeks, some take a few months!

Over the next few days, it was obvious that Brooklynn was fighting off this infection. She was very lethargic, ate and drank little, hardly spoke, non-responsive, and mostly slept. She constantly had loved-ones by her bedside and we kept her in a pull-up most of the time because she wouldn't always tell us when she needed to use the restroom and when she did she would always change her mind just because she didn't want to have to be in a sitting position. The sitting position made her head pound, cause dizziness that resulted in nausea and vomitting- so of course we understood why she always wanted to be laying down and she did for probably 4 days straight.

Her biggest excitement came Monday night when Grandma brought Maylee. She was SO happy to see her and it was the first time we had seen her smile since the sedative. At least until Brooklynn was ready for bed then Maylee was being too loud and Brooklynn was ready for her to leave :)



 Paul stayed everynight after the first night so I could go home and get good sleep on my bed, a shower, and spend sometime with Maylee. I would stay til brooklynn fell asleep and be back before or just as she was waking up. Paul was such a good care taker. Brooklynn basically became as an infant again. We had to change her, feed her, carry her, soothe her crying, dress her- everything. Which we were happy to do but that just explains her condition. Her hands shook anytime she lifted them to use them and so she would be hesitant to try anything and eventually ask us just to do it for her or she would tell us, "I can't". So sad. As the days progressed her condition slowly got better and she would attempt more things.

The MRI didn't happen until Sunday and the results came back Tuesday normal :)



Getting wheeled up to the MRI



Getting ready to go under. A little nervous about new people in scrubs.

Trying to wake up after the MRI

When they put her under it stung at first so she cried, but less than 5 seconds and she was sound asleep. I worried a little while waiting for her to wake up because it took a little longer then they said it would, but all was well.

Sister came back to visit on Tuesday and we started our many wagon rides! It gave B a change of scenery and made her SO happy. Sunday night we face-timed sister at home with Auntie Shayna, Aunt Brooke, and Uncle Ryan and Brooklynn started crying saying she wanted to go home. It broke my heart.



Excitement for wagon ride.



Still feeling sick but still wants to ride in the wagon.





We would take her outside to get a little vitamin D, but she only lasted so long before ready to go back inside. We would get back to the room and she would just stay laying in the wagon for awhile because she didn't want to climb back in the bed. She started attempting more things. She could only focus on a movie for maybe 15 minutes and then her head would hurt so she would take a nap. She loved playing games on the I-pad or our I-phones and it was good for her to use her hands.


With our favorite nurse while we were there

After getting the results on Tuesday, Dr. Scott, allowed B's IV to come out, after proving that she was eating and drinking normally again and using the restroom. As soon as that came out, B's spirit completely turned around! It almost freed her from the entire hospital experience I think. It was great.



So happy to have the IV out- finally!

Dr. Scott also explained that medically there was nothing left for them to do and now it would just be time and therapy (physical and occupational and maybe a little speech because we were noticing it had been affected). She said the P.T. Dr. would be in later to discuss us moving to the in-patient rehab facility. The neurologist wanted us to go there for 2 weeks! They really didn't want us going home until she was walking on her own and at this point she was only sitting up by herself and when she did it didn't last long and her head was still unsteady. We did work with some therapists while in the hospital- playing with toys, trying to sit up, trying to practice walking, etc...

Tuesday night we spoke with the P.T. Dr. and after discussing our situation, and what Brooklynn needed he was content with discharging us and us doing out-patient rehab with some follow ups. So we began thinking we would go home that night. But the neurologist put a HUGE stop to that. She was not happy about it and we had an evening full of emotions and decisions because they would only discharge us against medical advice but they were telling us that medically there was nothing else they could do and now it was just therapy and the therapist was fine with us going home. They were contradicting themselves and of course they are not available at the same time to discuss and make plans so the night slipt away and we decided to stay one more night. Paul and I both stayed that night.
The next morning we came up with a plan with all the Dr.'s involved and still the neurologist was not happy. She was concerned about Brooklynn falling at home and hitting her head. She said she had never discharged an Ataxia patient home, but only to an in-patient rehab facility. Nonetheless they agreed to discharge us. I assured her I would keep a close eye on my daughter and I was just as concerned or more for her well being, care, and recovery. She doubted me because I was SO pregnant and the limitations I may have. I assured her I was also capable of multi-tasking and taking care of more than one child! Not to mention I knew I would have help from family! I really struggled with some of the staff  making Paul and I feel like we weren't making a good decision for our daughter and we would somehow neglect her care. I don't like how the medical industry can make you feel like you have to do what they say or recommend and if you don't then somehow you are not doing the right thing. We are intelligent and know more about our situation and children than they do. Also that you get into a situation where you feel so helpless and you just trust that these medical "professionals" are really doing their job with the best intentions, honest intentions, and not just in a business to make money- but who am I kidding, we are all in our fields to make money. But usually when we go to purchase a product or service we are aware of the cost before we decided to purchase it. That is not the case in the medical field, especially at a hospital. We had no idea what anything would cost until the bills start rolling in. Of course you don't make those medical decisions based on cost, but it is of course in the back of your mind. In the end, Paul's employer has eased any of our concern about the cost of this experience by utilizing their global charity fund to cover any and all of our out-of-pocket expenses! Can you believe what a HUGE blessing that is! I cried when the offer was given to us. Being grateful doesn't do it justice. I am beyond thankful for the generosity, genuine concern for our family's well being, and love that we have felt.

So we were in the hospital a total of 6 days and after being home Brooklynn made HUGE strides on a daily basis and her spirit was so high and happy being at home instead of a facility. She attended a few sessions of O.T. and P.T. but really most of the work has just been at home in daily living. After being home 8 days, she started walking on her own and now she is running around doing everything on her own. She can dress and undress herself, feed herslef, brush her teeth, use her hands, color, use the bathroom alone, sit, stand, walk, and run. Her speech has also come back strong. She has moments of feeling unsteady but they get less and less with each passing day. We are so thrilled with her progress and grateful that her situation wasn't any worse.

We may never know why we needed to experience this or why brooklynn needed to but I'm sure the knowledge we've gained will help someone else in the future when we can lend assistance to someone experience a difficult time. We've been overwhlemed with the support and kindness offered from family and friends on Brooklynn's behalf. There have been phone calls, texts, emails, facebook messages, letters, gifts, balloons, flowers, cards, meals, babysitting, visits, money, you name it! WE feel so blessed, so loved, and so grateful. So many tender mercies!

Loving her princess card from Great Grandma and Grandpa Giddings

The most amazing gift basket from the Cluffs- who were also in the hospital with their son.

Such examples to us of still thinking of others even when times are tough for yourself. WOW. We were speechless.

Thank you again to EVERYONE- near and far. Just so I can remember and give a little shout out to those who really went above and beyond:

Those who visited Brooklynn in the hospital:

Grandma Ridley- almost everyday

Auntie Shayna- twice

Aunt Brooke and Uncle Ryan- several times

Uncle Joshie

Great Grandma and Grandpa Giddings

Pink Grandma and Adam

Aunt Dari and Dolph- such a sweet surprise

Auntie Stephy

Cluffs

Gifts received in hospital from:

Aunt Brooke and Uncle Ryan

Great Grandma and Grandpa Giddings

Aunt Dari and Dolph

The Cluffs

The Peddars

Auntie Stephy

Gramps and Gran

The ER nurse

Meals provided in the hospital and at home by:

Grandma Ridley

Great Grandma Giddings

Pink Grandma

Auntie Stephy

Aunt Cassie

Babysitting and keeping Maylee:

Aunt Brooke

Grandma Ridley

Auntie Shayna

Aunt Cassie

Auntie Stephy/Brianne/Karrie

Gift packages/treats/letters received at home:

Gramps and Gran and Anna

Great Grandma Poulton

Aunt Donna and Uncle Steve

Trish Mattson
Kathy Rykowsky

Murrieta Hills Relief Society Presidency

Busy Bee Preschool

Brooklynn's bff- Sophia

And of course ELEVATE! Truly feel blessed that Paul works with such great men. Their vision and desires are noteworthy and inspiring.

So blessed with AMAZING family on BOTH sides- Ridley and Giddings, and friends that I consider family :)

Grateful for my little family of 4- soon to be 5, and the love that we share. Grateful we're all back to good health and anxiously waiting for little sister to arrive soon :) Grateful for the tender mercies shown us and for a loving Heavenly Father who sent us peace and comfort in a time that could've been chaotic and stressful. We made it through because of the great people listed above and because of our knowledge of Him and His plan for us and that no matter what we will be a family FOREVER!