This week marks the proposed end of 9 months of this round of physical therapy for my oldest. It has been a long road. I had mentioned in a previous post, that my daughter had been diagnosed with Ehler's Danlos Syndrome and I'm going to take a little time now to talk a bit about our journey in learning about EDS, in the midst of life, what we've done so far and what I've learned about raising a larger than average family when there are things beyond your control. I've broken this up into two parts because it is long. The first part is a chronological account of the craziest year we have ever had. I promise, although it is long, it does come to an end. The second part, that will be posted in the next day or so, is about what I have learned.
My dear girl had grown 10 inches in a matter of 2 years. Her knees would hyper flex. So our pediatrician, whom we'd been seeing for the past 13 years, at that point (about 2 years ago now), wanted her checked for Marfan's Syndrome. After a little bit of time passed and her knee had gone out from under her a few times, I finally got the initial appointment scheduled with the specialist he wanted her to see. She had already had a bit of physical therapy at this point. Her first appointment with the specialist was scheduled mid-January of 2011. That year held a lot of unusual medical stuff for this family.
New Year's Day came and we ended up in the ER with our then 6-year-old daughter because she was vomiting every hour, on the hour, and it wasn't stopping or responding to oral anti-nausea medication at home. When we got to the ER, their oral anti-nausea medication didn't stop it either. They had to put her on IV anti-nausea medication. Over the next few weeks, this bug hit all but 2 of us. It hit me on the day we were scheduled to see the specialist. Fortunately, Steve had scheduled to work at home that day, so that I could take her to the appointment. I was 6 months pregnant with our 6th child. I ended up sick in bed that day, while he took her to the appointment.
As soon as the doctor saw him, standing 6 ft, 5 in., tall, she remembered why she was seeing our daughter that day. Our daughter showed orthopedic signs of Marfan's, but we needed to see a few more specialists to reach a diagnosis. So, in February, I took her to see the pediatric cardiologist. They did an EEG and an EKG. Everything looked normal, thank goodness! But she is suppose to have these tests every year now, until she turns 21. With both Marfan's and EDS, there is a possibility of an enlarged aorta, which can be very serious. They are both connective tissue disorders. So far, all is good, in that respect.
We also lost our washing machine in January and ended up replacing both the washer and dryer.
March came and we were rear-ended in our 15-passenger van, right in front of our church. We were pretty well protected in our van, although it did have damage and needed repairs. The poor lady who hit us had a mess, for what was left of her Jeep. I don't know if it was totalled or not. She was taken away in an ambulance. The children faired okay and went in to our church. After things were settled, Steve took me to the ER to be checked, because I was 8 months pregnant. After they checked me out in the ER, I was sent up to maternity for observation. Everything looked good, the baby wasn't in distress, so we were sent home that afternoon. A good friend from our church took our children home from church for us and stayed with them until we got home. Two of the girls were already scheduled for x-rays the next day, one of them being oldest. She needed x-rays to determine if she had scoliosis, as part of the Marfan's work-up.
Two weeks later, we were back at the hospital with me having some problems that needed monitoring. There is no way to really know if it was related to the accident or not. I was monitored for about two days and then the decision was made to deliver the baby. Our beautiful baby girl had to go to the NICU because her sugars were out of balance. She stayed there until we were both discharged. I spent my days going back and forth between my room and the NICU. The other children didn't get to hold her until we were home. There was a sibling day, but for the siblings to be able to come into the NICU, their doctor needs to provide proof of vaccination. Unfortunately, we were not able to do that, because our dear pediatrician was hospitalized as well. So they looked at her through the window near her bed. It was so hard for them! We went home after I had been there for seven days. I was restricted from driving for three more weeks. I also needed to find a pediatrician that was willing to see the baby while we waited for ours to get well.
After the home nurse checked the baby out and then me, she saw my legs were still swollen, and she started looking for signs of Deep Vein Thrombosis (DVT). She felt that I was okay. But a few days later, when I still had swelling, and I had been dreaming about a blood clot getting into my lungs, I called my OB and he suggested that I go ahead in to the ER and get it checked out to be sure. So my friend came and picked the baby and I up, since I couldn't drive yet. Ultrasound showed no blood clots and I just concentrated on increasing my water intake. Soon enough, the swelling went down. But, peace of mind with the possibility of something like DVT, is priceless! Easter came and went. Thankfully, I had finished the preparations for Easter before I was in the hospital!
My dear daughter hadn't had much trouble from her knee and had gotten a brace for support, so that she could continue clogging. So, she was able to take part in the Garden State Stomp workshop. The day of the workshop was the day that I could start driving again! So I took the baby and the three oldest to the workshop. That was the beginning of May.
I also ended up taking the baby to see a pediatric cardiologist at another location, who turned out to be the same one that saw oldest in February. The pediatrician that had been seeing baby, heard a rapid heartbeat and wanted her heart checked. She had an EEG and an EKG. She did not tolerate it well, but everything checked out fine.
In June, we had a family vacation. The day that we were to come home, our then 5-year-old woke up vomiting. Somehow, over the course of the year, this child was sick to her stomach 4 or 5 times! And the dear child that started the year in the ER, went to the ER again, this time for a fractured arm. In July, just before the rounds of camps started she was given the okay to participate in the activities at camp, because her arm had healed. However, when she got home from camp, she went to the ER again. In all the busyness, we hadn't stayed on top of the care of her new ear piercings and one of them ended up inside her earlobe. They cut the earring out of her earlobe. Thankfully, it healed well. This time, we are waiting until the fall, when camps are done, to get that ear re-pierced.
Also in June, oldest saw an opthamologist as part of the Marfan's work-up. All the doctor found was that she needed glasses for near-sightedness. So far, not enough body systems showing signs of Marfan's!!! However, our pediatrician's health wasn't improving and he had to close his office.
In July, I had some major dental work done. I learned that pregnancy and nursing requires increased calcium. The body provides for the baby first. So, if you aren't getting enough for both of you, your teeth will suffer for it. Then I ended up in the ER again, this time for a ruptured ear drum. Then, oldest saw genetics. We got the diagnosis of EDS and recommendations of what physical activities are safe and what are not. Then she went off to camp with a note of what she couldn't physically do there.
The next week was the beginning of August. We had another family vacation, at camp. On our way there, dear child who started the year in the ER was once again sick to her stomach. We had fortunately packed stuff just in case. She felt better the next day. But then, a couple days later, she was back in the ER again (because there was no local doctor's office that we could take her to), this time for pink eye. I think it was bacterial and not viral, because she seemed to have gotten something in her eye while playing on the playground. Once she was cleared of the pink eye, the next youngest got a black eye, from walking in front of someone swinging, I think. We were so fortunate that one of our neighbors was a nurse!
After we settled back in at home, we had that earthquake that was centered in Virginia. We didn't have much to deal with, as far as aftermath, but it was a little unnerving to feel the house shake! That same week we had Hurricane Irene to deal with. I spent time gearing up for it. We spent that night in tornado watch, the three oldest of us taking turns on watch with a crank radio. We had spent some of the time in the basement and some of the time in our family room and center hall. We were so glad when it was all over. And then, we discovered that one of the girls had come home from one of the camps with lice. I spent the next two weeks treating all but the baby's head, washing bedding, sterilizing and vacuuming. I wouldn't wish that on my worst enemy. It was not fun. This year, we are checking heads when they get home from camp.
In September, oldest was at a friend's house and the mom, who happened to be in medical school, could hear her wheezing from clear across the room. My friend listened to my daughter with her stethoscope and said she was indeed wheezing and may have asthma. So, it was off to our allergist the next week. Confirmed mild asthma. She had been telling us for a while that she thought she had it, but we never heard her wheezing in our presence. We've had experience in hearing wheezing, because her younger sister has a life threatening allergy to tree nuts and has a tendency to wheeze with her bad colds. At some point in the fall (I can't remember when it was), one of the other girls fell outside and hurt herself and thought she had broken a bone. Steve took her to the ER that night after meeting us at 4-H. Turned out to be just a sprain, thank goodness!
In October, oldest's knee went out again and she was on crutches. Steve took her to the ER after he got home from church board meeting. We went back to the specialist. More physical therapy for 3 times a week, for 12 weeks in an attempt to make the knee stronger, before considering surgery as a last resort. Let me just say, physical therapy is different than being involved in sports. You make accommodations in your schedule for sports, because it's something that you plan for ahead of time. Physical therapy is out of need, not desire, and you can't exactly plan for it. It takes time out of your normal routines too.
In November, just before Thanksgiving, we lost my grandmother, the last of our living grandparents. The weekend after Thanksgiving, oldest's good knee went out from under her. We went back to the specialist that week. What we've learned during the year, is that her kneecaps ride high and with her EDS, her kneecap would sublux, or slide out of position and then slide back in. And it would happen at random times. No way to control it, really. So the doctor said that since the good knee was starting to compensate for the bad knee, we needed to do something to give her stable legs. We needed to schedule the surgery for the bad knee. We scheduled the surgery for February 2012, after giving her a chance to get some social activities in.
In December, we needed to go back to the allergist for follow up for oldest, as well as the one with the nut allergy. And one of the other girls was diagnosed with very mild asthma, not as bad as oldest's. Plus, I needed to find and settle with a new pediatrician. I got the five older children set up with a pediatrician office we wanted to check out and found out that our beloved pediatrician of 14 years, had passed away in November.
We also lost our microwave in December and ended up replacing it.
January of 2012 was better than January of 2011. Oldest had her big social activity before her surgery in February. Then we spent the next two weeks at home with her recovering, before going back to see the doctor for follow up. Then we started more physical therapy and focused on her recovery, per the doctor's instructions. Since January of 2011, it felt like we were a living, breathing science textbook. Through out all of this that I have shared with you, we also had the regular colds (some needing nebulizer treatments), allergies, and such that are normally encountered in a year, with Steve taking care of his own health, but, we have never ever, had a block of time like this, ever before. We had to do some creative out of the box learning mixed in with our regular style of schooling.
Oldest is doing much, much better now and has one physical therapy appointment left, before she has a mini summer vacation. She is back to dancing now and is grateful to have a knee that is more stable. And now, we are able to schedule other regular health maintenance medical appointments that we didn't have time for.
You can breathe now, because I'm done with this part. Ha, ha, ha! Next, I'll explain why I took so much of your time to tell you about the craziest year we've ever had.
