Heading in the right direction!

 Today Sam had her follow up with Cincinnati Children’s Rheumatology. She had bloodwork earlier this week and was pretty nervous. Dr. Schulert was as wonderful as ever and immediately set her (and I) at ease. He said her bloodwork is continuing to trend in the right direction. 

Her Sed Rate is nearly a quarter of where it was in April and her CRP is back to normal!!! Huge win for the inflammation numbers. She is a little anemic, but almost all of her bloodwork had improved. 

He checked her joints and range of motion and said she looked even better than in July. Her knee swelling is completely gone. 

As she danced and sang through the appointment he said he still is in awe that Naproxen has helped her the way it has so far. Seeing the sick shell she was in April, now back to her perfect curve on the growth chart and full of sass and fun. 

Thankfully at this point he is happy with how the current meds are working. Her kidneys are in great shape and she isn’t having any side effects. So we will stay on twice a day naproxen. He had thought about taking her down to once a day, but I brought up the concern of not knowing what caused it and the fear of going backwards. He has been amazing at listening to my concerns and acknowledging Pandas without ever mentioning it. She has an eye appointment in November to make sure the Inflammation isn’t effecting her eyes and if that is all good we can avoid changing to the Arthritis medicine for the next few months. 

He said the type of Juvenile Arthritis she has and the way she is trending she could go into remission at some point by the time she is an adult. 

She will have repeat lab work and an ultrasound in 4 months and visit with Dr. Schulert again. Overall it was a great visit and we are so thankful for her continued health and all she is able to do again. 

She has a few more goals to reach, like getting her leprechaun kick back and getting her speed back. But, this girl has come so far and is so brave! Looking at her lab work trends and seeing how sick she was and knowing how that had effected everything is hard to hear. The memories of what she has been through and continued medicine and appointments are hard on her. I am so proud of her tenacity and her continuing to push herself each day. 

She is o happy this appointment and bloodwork are over! Now on to Soccer tournaments, volleyball and the school Christmas play! So much to look forward to! 

Keep moving forward … Sam

 The last few weeks have been a bit of a whirlwind. While we have had a lot of life going on for our family, we have had some stuff going on for Sam as well and she has had a few important appointments. Three weeks ago we met with a psychologist at Lindner Center of Hope. She had just come home from a national convention studying Inflammatory Encephalitis and PANDAS. We told her Sam’s story and she saw her bloodwork from April. She said she was surprised Sam hadn’t been hospitalized back then when her numbers were so high. She said every single symptom she has had is a symptom of PANDAS. We discussed Children’s not diagnosing or treating it as well. She added a panel of bloodwork to Sam’s orders from Rheumatology to check for strep titers. A strep infection would be the one missing piece to a full PANDAS diagnosis. Sam has never in her life tested positive for Strep. 

Her bloodwork came back with positive strep titers for past infection. The piece we need for an official diagnosis of PANDAS. Mom isn’t crazy. Mom was right. Never doubt your intuition and never back down for your kids. Even if your pediatrician tells you that you need therapy and you worry too much, trust your gut and Push for answers! We now have a doctor who will treat if she flares again and knowledge to guide us.  

I have found an amazing support from Pandas Network and Sam was able to be a part of a study to find out why some kids get this debilitating autoimmune response. 

Still, Cincinnati Children’s doesn’t recognize or treat and her doc at Lindner wanted to make sure there wasn’t something else we missed. So, her Rheumatology appointment was  today. She saw Dr. Schulert and Dr. Vega. 

There was good news and not so good news. 

The good news is her inflammation numbers are down, like half of what they were in April! Her symptoms have almost completely disappeared. She has grown 3/4 of an inch and gained 20 lbs!! She is now 2 lbs up from where she was before she got sick! Back on her growth chart in perfect size again. She popped her knee a few days ago, so hasn’t run in a few days, but otherwise is swimming, playing and back to herself. This picture shows the difference from April to this week. 

The not so good news. Her inflammatory markers aren’t normal. So something is still going on. They did an ultrasound and she still has thickening of her knee and a small amount of fluid. She will stay on naproxen twice a day for three more months and has officially been diagnosed with Juvenile Idiopathic Arthritis. Thankfully it seems contained to one joint. He still thinks it probably came from whatever started all of this back in November.

 

He noted he saw the other bloodwork and acknowledged our PANDAS, but of course won’t treat or really document that through Rheum. We trust Dr. Schulert and are so thankful to have him on Sam’s team. From the start he has looked for answers, listened and been a great communicator. His bedside manner and care have been phenomenal and we are happy to have both Lindner and Children’s watching her closely. 

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She will go back to see Dr. Schulert and repeat bloodwork in 3 months. Dr. Vega will repeat the ultrasound as well. If she has fluid or thickening they will discuss how to further treat the JA. This would be a steroid shot under anesthesia or a weekly medication. Tj and I have already discussed we would do the medication as it would treat her autoimmune illness as a whole body, not just the one joint. 

Months ago we were so lost and in a state of turmoil. Today we have our girl back and we have two diagnoses.  Two autoimmune diseases- Juvenile Idiopathic Arthritis and PANDAS. 

It was a lot to take in, but we will take this as a positive. Praying for continued healing. Symptoms to stay far away and for Naproxen to continue to take away her inflammation. She has come so far and we are so incredibly proud of our girl. 

She is stepping into her sister’s shoes and representing the hospital now. She is excited for new beginnings. 

This girl has grit and she is a brave fighter. Keep the prayers coming please. 

Sam’s journey update! A special Graduation

 As I sat in my car overlooking the windows to ABC Pediatric therapy I was overcome with emotion. Six months ago we walked through the doors with our frail, sickly daughter who feared everything.

When Sam started OT in January she couldn’t function. After a month of low grade fevers, leg pain and exhaustion she started with new symptoms.  

 . She was paralyzed with fear, unable to eat, unable to walk or move freely. She had lost the ability to run, jump and walk normally. Terrified of stores, restaurants and strangers. She lacked the ability to walk up stairs and would freeze with fear attempting to go down them. She couldn’t sleep alone and seldom was able to be alone at all.

 She struggled with touch and noises. She lost her balance easily and was unsteady. She was a shell of herself And spent most of her time in one single spot on the couch. 

Occupational Therapy was recommended by her therapist who saw what she was dealing with was much more than anxiety.  Meeting her OT , Sarah, changed so much for our family. As an Occupational Therapist her goal was to help Sam retrain her brain and muscles, while allowing her to play. For our family she gave us hope, searched for answers and always made things the best they could be for Sam. 

In the beginning of this journey they worked on sensory skills, moving past fears and using her body. For a few weeks she brought her stuffed animals and mom. For a few months mom went back and eventually she went back on her own. She worked on her balance, her muscles, her tactile sensory skills.

When we started Sam couldn’t sit on the floor. For weeks Sarah helped her gain the confidence to sit on the floor and get up using games and toys. She never rushed her, never made her uncomfortable and always was a positive light in such a terrible situation. 

For Four months Sam came twice a week and then the last few months once a week. January through June working hard to get back. 

OT has become a safe space for Sam throughout all of the trials the last year. Even with getting better and then getting much worse again, therapy was something she looked forward to weekly. With multiple specialists visits at the hospital and never finding an actual diagnosis, Sarah has always been proactive and helped explain the parts of OT and how it would help Sam. When we found Sam had very high inflammation markers, swollen knees  and needed Naproxen to help her Sarah was supportive and continued to keep Sam moving forward. 

Sam has come happily and confidently each step of the way.  It has been so rewarding watching the changes and successes she has accomplished. It has means more than I could ever explain.

Occupational Therapy was the service that Sam went to ABC Pediatric Therapy for, but she got so much more than that. She found herself again. She trusted a stranger when she didn’t even trust herself. She formed a relationship that I have promised her we won’t let go.

 

Today she walked into her once a week OT for the last time. 

She and I both can’t help but to be a little sad. This place has become a second home to Sam and she absolutely loves all of the therapists she has come into contact with each week. She has gone from her lowest low to now her highest high with the help of Sarah. There have been multiple doctors, specialists, medications and therapists involved in her journey but, Sarah has made her feel heard. She has been a safe space, her happy place and a part of her life that created a positive spot even on her hardest days. 

As a mom, I will be forever grateful for having someone listen to me. When I was scared and things were so unknown, she listened. She researched and searched for answers. We worked together to help Sam the best we could. 

37 therapy appointments. 

Now today is Graduation.

The end of a chapter we never imagined would be part of our lives. 

Sam may come back for sessions this fall to help her through changes or God forbid setbacks. 

Regardless we know Sarah is stuck with us forever. So grateful for this therapy office right down the street that we never really noticed before. 

Life is tough, but this girl is tougher. 

So proud of our girl and all that she has battled through and accomplished. 

She is back. 

She is running, jumping, swimming and 100% her sassafras self. 

 

Outgoing, friendly, full of energy and a complete goofball. We are so incredibly thankful everyday to have our Sam back. For awhile we were scared we would never see her again and count our blessings every single day. 

She has bloodwork, ultrasound, eye appointments and her Rheumatology appointment coming up as well as an appointment at Linder center with a doctor who acknowledges PANS and PANDAS tomorrow. Please keep the prayers coming. 

Blessed, beautiful girl...

Anna and I talk often. She is so far very open with me and I pray as she gets older our relationship stays this way. She often brings up and talks about the hospital. She remains very aware of the care she was given and the circumstances surrounding her stay. She remembers every little thing and likes to discuss it. We often talk about how we feel now compared to then and how things make us think of being there. Especially The Muppets Most wanted, which we watched over and over during her stay. 

Today she came home from school with her 4th grade pictures. I told her I loved them and asked her what she thought of them. She said "I love them, but I can't believe how good my eye looks. It is normal!"  I said of course it is! She then said- "the last time I had my picture taken in that dress was when I came home from the hospital. I can't believe how different I look. When I look in the mirror you can't even tell where my surgery was."

She is right. You can't. My beautiful girl has not even a scar from her surgery that was just over 6 months ago! Not a day goes by that I don't think of the miracles of medicine that were performed on my child that night in March. As we went back to see her in post op I remember the nurse saying that the stitch was a "plastic surgeon's stitch" and we wouldn't see where it was soon. I thought to myself, yeah right! But, she was right.

 Dr. Nerad not only took the infection from her body, but he did such amazing work that the physical evidence is gone. These gorgeous baby blues are as perfect as they ever were. Not a moment goes by that I am not thankful for the care that Anna was given.  Now as I see the joy she has because her eye "looks normal" to her I am even more thankful. I told her today she is probably the only 4th grader who had a plastic surgeon do her surgery. Blessed, beautiful girl.... 

Filling fifty stockings... We need your help!!

Earlier this week Anna, Wy, Sam and I took a van load of stuff to Cincinnati Children's Hospital.

We took new costumes, clothes and toys. When we talked about what we wanted to donate the kids decided that the kids in the hospital may not have costumes and would want one to wear at the hospital. 

After we left we started talking about what we could do next. We thought about what a child who has to spend Christmas in the hospital may be missing. Wy said they probably miss their Christmas tree and from there Anna said what about a stocking? So our idea was born with that. 

           

                Filling fifty stockings. 

We are unable to donate anything edible, so we are going to stick with small toys, play doh, word searches, fun pens and markers. When I spoke with Miss Jane at CCHMC she said the best thing to donate would be gift cards. Something new that we learned is that we can get gift cards to the hospital gift shop! So not only will the kids get a gift card, but they Can go shopping themselves! 

Our goal is a big one- hoping to fill our 50 stockings with $10 gift cards each- so we need to raise $500! If you are at the hospital and would like to purchase a gift card that is great! If you would like to donate money we will purchase them with our final amount and split it 50 ways!  Our family will be taking care of the 50 stockings and we are hoping a few classes at school could help and collect pencils, markers, word searches, soduku books, pocket puzzle books and small stuffed animals. If you could help by purchasing just a few things we would appreciate this so much! 

We know we just asked for help in May, but what a great reason to get your heart ready for the Christmas Season!

 We will plan on making our delivery in early December. We would like all donations by December 5.  Please let us know if you would like to be a part of helping make Christmas a little brighter for the inpatient kids at Cincinnati Children's Hospital. 

****************update 11-12-15***********

We are on our way! Thanks to Grandma and Papa Cox we have 50 stockings! We have also received 50 cans of play dough from the Willetts, a box of toys from the Hetzels and our first gift cards from the Williams family! We have purchased small prizes and books for each stocking and have door hangers to donate as well! We have Anna's 4th grade class making cards to put in each stocking! 

We still need you! We are in need of gift cards for the gift shop at CCHMC. Please help if you can!!