My name is Jamie, and I am a wife and a mother. We reside in Arkansas. I have been so blessed to have a loving husband that goes above and beyond for our children and me. I wouldn't want to do this journey without him. God knew what he was doing when he put us together!
My oldest daughter is almost 20 and is a sophomore in college. She was my first blessing and there are truly no words in the English dictionary that can describe how proud I am of her.
My youngest daughter is Jo. Her name is Madilyn, and she is 6 years old. She just recently in the last 6 months realized her name is indeed Madilyn and not Maddie Jo. As we have called her Maddie Jo, Jo, or JoJo her whole entire life.
In future blogs I am sure I will talk more about my husband, Terry and my oldest daughter who Jo calls "sissy". This blog is about Jo and her rising above what we thought was just a sprang. So, let's start from the beginning before you guys get bored and decide to skip to another blog.
Jo's 6th birthday was on April 6th. Who knew in just a couple of weeks, everything would change...
Jo was in her first year of dance and competition dance. This girl was a noodle and capable of doing things that girls with 2-3 years of dance experience could not do. Now, I did not come from a dance upbringing, there is no swag in my blood. HA! Shes a natural through and through and she absolutely loves dance and the stage, the spotlight. She was gearing up to start performing solo for the next year and was absolutely ecstatic about it. To be 5/6 and find your passion, is truly remarkable. To watch her excel and naturally work a stage was just lovely.
On April 25th, I picked up Jo from school like I do every day. It was a Monday and our normal routine at the time was Monday night dance class. When we arrived at dance, we changed her clothes in the car (something we always did because we normally arrived before the doors were open.) She threw her legs in my lap so I could help her put her jazz shoes on and I noticed that her ankle on her right leg was REALLY swollen. I investigated and checked for tenderness, flinching, something but she had NO reaction whatsoever. I fought in my head on what to do because at this point this little 6-year-old was adamant that she wanted to go to dance class. So, I put on her jazz shoe, and we got out of the car. I decided that i was going to have her run around the car and if she limped, flinched in the face or have any sign of pain then we would go on to the Dr. She ran three circles around that car and being the little "extra" she most times can be, she e did jumping jacks to prove to me that she was not in any pain. She really wasn't, which made me even more confused on what was happening. So, I took her in and as her teacher entered the waiting room, I told her what was going on and call me if she starts complaining. (I stay in the parking lot. lol)
That evening once class was out her entire leg was
swollen and yet she was still not complaining of any pain. Which still boggled my brain. Needless to say, we ran down the road to the ER just to make sure this particular day she decided to have superpowers that kept her from feeling pain. Now, I certainly did not think it was broken but something was not right at all. After spending a few hours in the ER and after x-rays. They were just as baffled as I was. the x-ray showed no break, no hair line fracture, nothing that would cause that kind of swelling and how she presented also did not indicate a sprang of any kind. For goodness' sake she could jump, run, do the splits and hop on that one leg. We were told to watch it, ice it, wrap it and if the swelling doesn't go down check in with her primary.
By the third day, the swelling was getting worse. Infact, it was so bad in her foot that she could no longer wear closed shoes. We had to keep her in her crocs. We went back and forth to her Dr. and in that week another local Dr. became involved and at this point they were concerned that there could be a tumor, blood clot, or cyst blocking her lymphatic vessels. They sent us on to Childrens Hospital in Arkansas. We spent two days there. Test after test. The only thing we left knowing from them was that it was not a blood clot, there was not a tumor, and as that team said, " We are sure she will grow out of it and if not, we will have to wait until it gets worse to know more"
We left Arkansas Childrens feeling defeated. We knew that what those Drs. said was not acceptable and could not believe we were left trying to pick up these pieces and figure out this puzzle.
They did give us a compression hose for her to wear. It was an adult size compression hose and we had to fold to make it fit. We did make her wear it because at the time it made since. Once we returned to her primary, he also agreed with Childrens that she will outgrow this, and we would watch it. In the meantime, he was going to reach out to other Drs and see what they suggested our next steps would be. After a few weeks of the compression hose and seeing no improvement. Only deep indentions that were absolutely not normal we opted to stop the use of it. At this point her entire leg had grown so big, it was changing colors. Where she once had peachy skin color it would change to red and purple, her ankle, foot and toes were the worst. Anytime she would walk, bend or stand too long the color would change from purple to yellow when pressure was added. Even if she stood still with her toes planted on the ground. Our last check up on June 1st with her Dr. I demanded that he send us SOMEWHERE, I did not care who but to someone out of the state of Arkansas that was a specialist of some sort. He assured me he would work on it. At this point, I think he was even getting concerned.
Within a week I received a phone call from a pediatric cardiologist in Louisiana. He was not sure if he could help being that her workup in Arkansas cleared her of any heart issues, but he was willing to look at her and see what he could do. The beginning of July we saw the cardiologist and after several of his own test and his observation of her. He could not provide us with clear answers, but he knew where to send us. He told us that she is presenting lymphedema. He was not sure why, but he was shocked with how quickly she progressed. At this point her foot, ankle and bottom portion of her calf was so tight and hard, he knew she needed help ASAP. He did tell us that it is rare in kids and the specialist he knows are in the northern states of America and there is not many of them but would call around. My husband and I told him, we didn't care. We will go wherever.
After 3 weeks, his office called and said they found a Dr in Dallas that is willing to see her and build a team for her. They needed to run their own test of imaging and blood work. Basically, starting from scratch. We are 4 hours from Dallas, so these groups of Drs were trying to schedule everything for one trip. Needless to say, we did not get seen until August. Literally 2 weeks before school started. YAY! (Insert sarcasm)
We went and had the MRI done, ultrasound, bloodwork and the nuclear scan (toe web injection) There is a fancy word for that test, but I couldn't tell you without looking it up. The scan showed no flow of her lymphatic in that right leg, even after 6 hours. This is when she was diagnosed with lymphedema. We have an appointment set for April 2023 for a genetic test to see why this happened. The number one concern was to get JO in therapy because fibrosis is already present in her lower extremities, and they were blown away that this happened in 3 months' time. In fact, they didn't believe the swelling had just presented itself, but thankfully for new age technology and moms ALWAYS taking pictures of their growing tots. I was able to prove that it LITERALLY happened overnight in regards of the swelling. I have pictures literally everyday of April leading up to April 25th when the swelling showed itself. (NO CLUE why I took those pics prior) Needless to say, Jos lymphedema is for some reason more progressive than most. From what they said fibrosis and her size typically takes 6 months to a year of no treatment to get where we were at 3 months.
To make matters worse. There is NO trained CLT for pediatrics in our area. That means we have to travel back and forth to Dallas every few weeks and stay a week to get the therapy and for me to get trained for treatment at home. Which is fine, I will do whatever it takes to help her and prevent this disease from disabling her or at least prolong it.
I am not going to lie, I thought it was going to be easier than what it is. When we first started our week in therapy, I thought it would be something I would pick up quickly, but I was dead wrong. It is hard, it is frustrating, and it is literally life changing, not just for her but for us all. Learning the bandaging's, the whys and techniques behind it. Knowing how and when to adjust according to changes in the leg. Hoping you understood some of the tricks correctly and applying it right and walking away scared to death if your judgement call was right or is it causing more damage. Let's not get started on the terminology of the lymphatic system. Let alone trying to explain to someone that wants to know what's wrong with JO!
Since starting with our CLT. I have learned ALOT in our short time together. We spent a week in August and a week in September. We are headed back next week. I certainly cannot wait. August to September was a 2-week gap. This one has been 4 weeks and even though we
have seen improvement and honestly the first two weeks home was our biggest changes, but Jo became sick in the third week, and it seems we have lost 80% of our progress. The feeling of defeat is so strong, but I also remember what our CLT told us. "Give yourself grace, this is a long process and there will be highs and lows."
I will end this blog on this note.... Even though we have not had BIG HUGE success we have had small, big success. Her fibrosis (what they thought was irreversible) is actually breaking up, her skin texture is ALMOST back to normal, and with her toe cap she can fit into a closed shoe that is the same size as her other foot.
I will discuss what is in our toolkit on a future blog post.
Look at Jo Rising...